Tenacious ME
Tackling disabling autoimmune disease with obstinance and humor.
Guest Post At WBFL
Something pretty fantastic happened yesterday! While I was at my monthly infusion appointment, my very first guest post published over at WBFL Fitness! I am excited to be starting my journey as a legit, paid writer! This will hopefully be the first of many pieces I write for other folks in the health and wellness field. Spreading my wings! Want to see what I had for the WBFL audience? Follow the link to check out the post. While you are there, don’t forget to take a look around, Angela and Stacy have some wonderful advice and assistance to help get you on track with your healing journey.
My Marijuana fueled life
There has been a lot of talk over the years about the negative effects of marijuana (cannabis) use. Chief among these, always, is laziness. Cannabis use is often associated with a lack of motivation, unemployment , and general slothery. While it may be true that the right/wrong bud can make you one with the couch, that is certainly not the general case. Used right, marijuana helps people get things done. I’d love to share a few of the things Mary Jane has helped me get done over the years. Some of them may surprise you, they certainly fly in the face of the stereotype. Of course that’s no surprise to me, stereotypes are made for breaking.
The 1st and perhaps least surprising way marijuana has helped me over the years is pain management. I can’t really remember a time before chronic pain. By my teens ibuprofen had become part of my daily diet. I can’t tell you about the magical day I realized marijuana was my answer to pain management. It didn’t happen like that. I started smoking recreationally. It made my body and brain happy, so I used it more. Eventually it became a daily habit and I found I only needed ibuprofen on days when I didn’t think being “high” was a good option, mostly workdays. At this point, disabled and decades into chronic pain land, cannabis is my primary method of pain management, with the help of a few great herbal and topical remedies now and then. While the strains that completely eliminate my pain are few, and all definite couch potato strains, I have found most strains help keep my pain at a tolerable level, better than prescription medications ever have.
Marijuana is also the only thing I use to manage anxiety. That too I figured out accidentally. Remember that recreational use? Those stoned times with friends helped me find my way past the social anxiety that caused me to clam up in social situations. It quieted the panic when someone asked me a direct question. I found I could talk, think and actually enjoy myself while high. A very different experience from my normal fear-filled people interactions.
With marijuana muting the anxious side of me, I could maintain control, think, articulate. It pulled things into focus and made me feel good in my own skin. Years later, it is how I know I can navigate social situations that would otherwise leave me either pukey and stressed, or absent, because I’m probably not going without a puff.
With Mary Jane pitching in on two very constant fronts in my life, I have been able to step out of my comfort zone and reached for jobs, relationships and dreams. Marijuana was one of the keys to earning my bachelors degree. I am not at all ashamed to admit that I attended classes, took exams and studied under the influence of marijuana. It kept my pain in check and, probably more important in college, kept me socially engaged and focused. Since finishing college Mary Jane has helped me reach out and take chances anxiety would have easily talked me out of, again and again. Helping me find that quiet space inside, marijuana gave me the peace and perspective needed to heal trauma and emotional baggage. Since diagnosis with chronic illness, it has allowed me to keep my prescription counts around two, three if you count the marijuana (I certainly do.) It has given me the courage to write and share my story. Settling me when anxiety is at the helm, cannabis allows me to be in control and be my best self. It helps me have the resilience to face this life. It allows me to take pain dulled walks and produces rest when I am weary. I often think of where I’d be without it. The picture is sad and lonely, and probably littered with alcohol bottles dripping with depression, which you guessed it I also manage with marijuana.
Disclaimer- I am not a medical professional. If you are considering using marijuana for symptom management I highly recommend you make an appointment with a doctor who understands your conditions and can advise you concerning use of medical marijuana. If there are medicinal dispensaries in your area, they are a wonderful source of information concerning the medical properties of different strains. Use them!
Staying Calm in an anxious world
Well, there is no doubt about it, the level of anxiety and fear in the world today is the highest it has been in decades. Not since 911 have I seen this level of uncertainty in fellow Americans. With restrictions and measures to control the spread of COVID-19 ramping up again and the circus currently going on in our government, the unease many of us feel continues to grow. Uncertainty over the future of our food security, job security, and economic future weigh heavily on many along with fear for the health and safety of those we hold dear.
In times like these it is important to find ways to calm the anxiety and fear. An anxious, fearful mind is not a well-functioning mind. Studies have proven that fear and anxiety lower cognitive function and problem-solving skills. In a world where both could really make the difference between making it and not, managing those feelings becomes very important. We’re in the wilderness now, folks, time to refocus and watch for that lion, lest we become its next meal. Luckily, there are a lot of things we can do to calm the anxiety and fear so we can focus on what is happening here and now.
Disconnect
In these rather special and unique circumstances, the very first step we need to take to get the anxiety and fear under wraps is taking a big step back from the 24-hour news stream. If you’ve been watching this disaster unfold all day everyday on the news and social media sites, shut it off, set it down, and walk away! You did good to hang in this long, you deserve a break from your vigil. Because you don’t want to be unaware if the situation changes, choose a time once, or twice a day to check in with ONE news source. Just for the updates, just for the facts. Please don’t choose Facebook as that news source! Whatever newspaper, television newscast, or web-based news source you prefer, skimming it once a day will keep you informed without being constantly overwhelmed. If you are a frequent social media scroll-er, scroll on by the pandemic pandemonium and focus on those cute kid pics, the endless amazing free virtual experiences being offered everywhere at the moment, or pop into my new favorite group Quarantine Karaoke (created by a fellow Mainer 😊 because we know how to get through tough times!) for some music and entertainment. Unplugging from the news will help you put your focus on more positive things. Something that is really important if you are trying to manage anxiety right now.
Breath
It is a well-known fact that controlling our breathing can help us through many things. Breathing through pain, the Lamaze method, has long been used during labor. Many women, yours truly included, have continued to use this well-known breathing method to control other types of pain. But, did you know there are many other breathing methods? It turns out there are methods of breathing for increased lung capacity, endurance, pain, sleep, stress reduction and so much more. The simplest, and probably best-known method of breathing for stress relief is deep breathing. Another popular method that I have been using is the 4-7-8 method, a method that has been specifically identified as a great stress reduction and focus technique. Simply breath in for 4 seconds, hold it for 7 seconds, and exhale for 8 seconds, repeat 2-4 times, you may be surprised how much better you feel. The best thing about this anxiety management tool is you can do it anytime, anywhere, and it takes less than one minute.
Meditate
Since breathing and meditation go together like bread and butter, let’s talk about this ancient method for stress reduction and re-centering next. Used in India for thousands of years, meditation has been gaining popularity in western culture over the past few decades. Chances are, if you suffer from anxiety regularly, someone has suggested you try meditation. There is no doubt that this ancient technique, which involves focusing on our breath and going within, is an excellent way to re-center and regroup. If you’ve tried and failed, welcome to the club, like all things worth doing, meditation takes practice. There are a huge number of free guided meditations available online and even apps for that.
Yoga
Another gift from ancient India, yoga is a popular and well-known form of exercise in many areas of the world today. With a focus on stretching and strengthening many have turned to this ancient exercise to maintain strength and flexibility, but did you know it also reduces stress? Many of the poses, breathing methods and exercises commonly used across the varied forms of yoga are also excellent anxiety management tools. So, pop on over to YouTube, or dust that yoga workout video off and give it a shot. It is also a great way to get kids calm and centered, so invite the whole family to join you for some morning yoga to get that day at home off to a great start.
Take a walk
Not only is walking great exercise it is also a wonderful way to reduce your stress level. Taking a walk alone or with your family each day is a great way to promote the release of endorphins and decrease feelings of stress. If you are able to walk in a natural setting, that walk will be even more beneficial to your state of wellbeing. In some cultures, regular emersion in nature is even prescribed by medical professionals to help balance the stress of busy lifestyles. The Japanese call it forest bathing. Whether you choose to walk around the block or wander through the woods nearby, taking a walk daily will help improve your mood and, as a bonus, provide you with fresh air and sunshine, both of which help keep us healthier and more resistant to germs.
Exercise
It is no secret that exercise is a wonderful tool for stress management. If walking and yoga are not your thing, choose something that fits you better. Spending a bit of time focusing on moving your body, working up a sweat, and releasing those endorphins (happy chemicals) will leave you feeling better. So take that run, dig out those exercise videos, sign up for that virtual kickboxing class, and treat your body to some happy chemicals courtesy of biology.
Spend time in nature
If walking in nature is not for you, or you have mobility limits that make that a challenge, find ways to get out and immerse yourself in nature. Take a ride to the shore and watch the waves come in, grab a portable chair and sit at the edge of a field or woods and just watch for a bit. The less active we are, the more active our animal neighbors tend to be. Use this time to animal watch, learn to identify birds in your backyard, or just sit and take it all in. Take some time to close your eyes and listen to the rhythm of the world around you. The natural world is full of life we cannot hear when we are whizzing by with our heads full of worries and lives full of plans. Taking some time to just be in nature is a sure-fire way to reduce the stress you are feeling.
Music
As the Doobie Brothers song says, “give me the beat boys and free my soul, I wanna get lost in your rock and roll and drift away.” Music is a powerful tool, the right song can make us cry, pump us up, get us moving, and even soothe our soul. Playing uplifting music is a great way to decrease feelings of anxiety and drown out the fears of the world. If you also enjoy dancing, crank up those tunes and start a family dance party! Personal favorites when I need a lift are the Red Hot Chili Peppers, Michael Franti and Spearhead, and Queen, all guaranteed to transport me to my happy place, no matter where I am. Whatever music makes you happy, crank it up, don’t hesitate to belt it out, and dance till you feel nothing but joy!
Sink into a great book
Any bookworm will tell you the hands down best way to forget your troubles and the world around you is to delve into the pages of a great book. One of my personal favorite methods of stress relief and a constant in my life is reading. Whether you love fiction, poetry, biographies, or any other type of written work, grab that want to read list and sink into the pages of a great read. Be whisked away to far off lands, adventure with your favorite hero, re-read an old favorite. Reading reduces our blood pressure, stress level, and enriches our lives. It allows us to experience things we cannot go out and do ourselves.
Write it out
Writing is more than just a form of communication, it’s also a wonderful tool for dealing with uncomfortable feelings. Journaling or free writing about how you are feeling about the state of the world, your job, your family, etc. can help put things in perspective. Sometimes just writing something down will allow you to set it aside and move on with what needs to be done. It can also be a valuable tool for getting the things you wish you could say aloud but never would out of your head. You may find once your troubles are on paper, they are easier to let go, or debunk. Want to increase the therapeutic power of writing down the things you wish you could say? Grab a fireproof container and light that writing on fire, and let it go.
Talk it over
Prefer a sounding board to bouncing ideas around your own echo chamber? A chat with a good friend can do more than just fill the time. Talking things out often helps us to gain perspective. Even when it does not shift the way we see a situation, sharing our troubles with someone we trust is a wonderful way to destress and let go of the things that are eating us up. Since an in-person gab session with the bestie over coffee is likely out of the question, you’ll have to settle for a messenger vent session, phone call or video chat. So, make a date with your favorite folks to vent to and let it out.
Smile and Laugh
We’ve all heard the saying laughter is the best medicine. When it comes to breaking through the stress, it really is true. Laughter reduces our blood pressure, relieves stress and tension, decreases stress hormones and increases immune function. A good laugh will leave your muscles feeling relaxed for up to 45 minutes according to one study. And, as it turns out, smiling is every bit as good for us. When we smile our bodies release endorphins, serotonin and dopamine, three well known feel-good chemicals. As a result, the act of smiling can actually make us feel less stressed and more happy. So, dig out those comedies, read a hilarious book, play a foolish game with your loved ones. The sillier the better. Giggle, guffaw, and howl till you cry tears of happiness. You will feel ever so much better if you do.
Play
Despite the many benefits of play, as adults we do not often take the time to engage in playful activities. Play makes us not only happier, but smarter too. Playing reduces stress, promotes feelings of joy and happiness, increases our creativity and problem-solving skills. It is also a wonderful way to forget about the troubles in the world around us and build stronger bonds with those we love. When the world gets to be too much, dig out those toys, go on a dessert adventure with your kids in the living room, and get out those board games for some family fun time. Not only will you all be distracted for a bit, you’ll be happier and more relaxed at the end as well, thanks to those happy chemicals from all the smiling and laughing.
Get creative
If you’ve ever lost track of time while making something, you know the power of creativity. The creative mind is a wonderful thing. Being creative increases problem solving skills, decreases stress hormones, and is very much like a sort of meditation. The troubles of the world melt away as your brain turns to creative thinking and your eyes focus on the details of what you are making and/or referencing. When creating, brains release the chemical dopamine, known to increase feelings of happiness as well as improve focus and problem-solving skills. It turns out even something as simple as coloring in a coloring book can trigger the release of those feel good chemicals and reduce our stress levels. So, dig out the crayons, paint, cloth, wood, whatever you use to create and sink into a project. Allow the world around you and all the stress it holds to melt away for a bit.
Do whatever makes you happy
Because the ultimate antidote to stress seems to be happiness, anything that makes you feel happy will reduce your anxiety and stress. As we have learned, smiling, laughing, and creating all promote the release of feel good chemicals. There are many other activities that result in the release of those precious stress reducing hormones and chemicals. So, whatever it is that brings you joy, get up and go do it! Maybe it’s a cuddle with a furry friend, a jog around the block, a tidying spree in that closet you’ve been meaning to organize, a chat with a good friend, whatever your happy place is, now is a great time to spend more time there.
While there is not much we can do about the stressful state of the world today, there is a great deal we can do to manage the feelings of anxiety that stress brings. Taking the time to focus on activities that reduce our stress leaves us feeling happier and smarter. With brains that are relaxed and tuned for problem solving, getting through the current chaos will certainly be simpler.
Your Health Journey- Setting Goals for Growth
Getting that promotion, hitting you target weight, climbing that mountain, shaving a minute off your run time, we all have goals. It seems a natural human condition, the setting of benchmarks. Benchmarks that drive us to achieve more, do better, try harder. We look at where we are now and where we could go from here and set those intentions to level up.
When the goal is something easily measurable, like a number on the scale or getting a promotion, the finish line is obvious and its clear when you’ve met the goal. When our goal is something a little harder to measure, like being more present or managing chronic disease, those finish lines can be difficult to set and even harder to see. When the goal is a bit harder to define, it becomes important to shift the focus from that intangible goal of “being better” and instead home in on the journey itself, to focus on the growth.
For most of us with chronic disease, better disease management and more capability are ever present on the list of things we want to achieve. Unless you are wallowing in a phase of acceptance steeped in despair, a phase I personally don’t recommend spending much time in, you are probably trying to do the things you need to do to feel better and live a more “normal” life. Unfortunately, better and normal are not always terribly easy to define when it comes to disease management and healing.
What does better look like? Normal? Is that even a thing? One of the take home messages of 2020 has surely been that normal is entirely relative. So, how will you know when things are back to normal? What does better look like? How will you know you are moving toward it? What will let you know you are on the right path toward crossing that finish line? The answer is growth. It’s going to be extremely important to note the small changes in how you feel and what you are able to do in order to stay motivated and keep moving forward.
This is where journaling can be very helpful. Writing down how you feel, what you are doing easily, what is a struggle, and other details about your physical and mental health, can help you see little shifts, good or bad, that are leading you toward your goal of better health (or away from it). To figure out what things to focus on, it may be helpful to start by taking an inventory of the tasks in your life, as well as any persistent symptoms you wish to address. Consider what you can do now, what you wish to be able to do in the future and the things you used to do. This will help you determine what “well” looks like to you and to set some goals to get there.
Take a few minutes now, write down what “capable” you did in a normal week. Next, list what struggling you can do (on the worst days, no sense picking your best bad day.) Now, and this will be really important, consider the time between “normal” and now, was there a period that you were less able than you are now? Go ahead and make a third list if that is the case. Once you have your three lists, take a look at what you’ve written down.
The first thing you may notice is, there are a few things that end up on every list, no matter what life throws. There are always going to be things that have to happen, things we will do whether we feel able or not. Meals that must be made, messes that have to be cleaned, children that must be looked after, jobs we have to keep showing up to do. Because these things are constants in your life, it will be important to consider tracking how able you are to tackle them when you journal. Sure, you shower when needed, but how long does it take, how much does it wipe you out? Tracking things like that, can be a surprisingly good indicator of how well your health journey is going. If taking a shower used to lead to an hour laying on your bed staring at the ceiling and now you shower, dress and move on with your day, that is growth! Big growth. It is a small sign that you are doing much better. If you are lucky enough to have three lists, take some time comparing the now list to the as bad as it got list, I bet you see many small signs of growth. Write those down somewhere you will see them for inspiration. Those are the proof you are doing better, that you are indeed healing.
Next, let’s consider what you wrote down on that “normal” list, the list of things you did before disease hit and derailed that life. First, take a minute to cross off anything you do not want to add back into your life along with any task you have passed the torch for, no sense hanging onto things we do not need anymore. What you have left, is a list of what your ideal “normal” looks like. See a few possible goals? Put a star next to the things you most want to see come back into your life. This is what you are working toward. Keep them in mind as you move forward, they are the goal post.
If the goal post is too far away, consider the small steps that will take you there, and make a plan to begin to put them into action. For example, my master list of “normal life” included getting back to nature, specifically hiking. Coming from a place of barely able to walk down the hall to the bathroom, setting a goal of climbing a local mountain would have seemed, well a mountainous task. So, I started with smaller goals, much smaller goals. Goal one, was to walk a mile on a flat(ish) surface. Once I hit that goal, I moved on to goal two, walking on uneven ground, then to walking on the beach. It took me three years from the time of setting my I want to hike again goal, to actually getting that walk on the beach. If not for those smaller goalposts, I definitely would have given up. It was noting my progress, seeing my growth that kept me moving forward. It is that growth the inspired the next goalpost, uphill trail hiking, my summer 2021 goal.
Homing in on what “normal” looks like for you and setting a few small (or mountainous) goals is a great place to start moving forward on your healing journey. Noting the growth and breaking those big goals into smaller checkpoints will make that journey easier and more rewarding. Considering where you have been, you may even find that you already have a great deal of growth to celebrate.
5 Keys to Managing Your Autoimmune Condition
There is no doubt about it, life with an autoimmune condition is a challenge, one nobody wants but millions of people have. While the 80+ autoimmune diseases behave differently and require distinct approaches to treat, there are a few things that are beneficial to people with all types of autoimmune disease.
Nourish Your Body
One of the most critical areas to pay attention to when managing any autoimmune condition is nutrition. Our bodies use nutrients for every single process they carry out, everything from maintaining proper cell function to responding to an internal threat, relies on the presence of nutrients. Without the right micro-nutrients and macro-nutrients, your body simply cannot function properly.
This means it cannot rebuild damaged tissues, empty out cellular waste, or stop inflammatory processes. Managing an autoimmune condition without those functions working properly? Nearly impossible. Eating a balanced diet, taking a good vitamin supplement, and being sure you are drinking plenty of water will go a long way toward giving your body the support it needs.
Listen to Your Body
Speaking of your body, it is tired of being ignored. Now I understand completely the instinct to ignore its constant complaints. Over time you’ve gotten tired of it going on and on about the same old thing, so you’ve learned to tune it out, like a Mom with a Minecraft obsessed kid. Unfortunately, unlike the Creeper tales of your 11 year old, you are missing critical information when you tune out. Those persistent annoying symptoms? That is your body begging for help. It needs you to listen and DO something about the root cause. Until you do, it will just keep droning on, turning up the volume as you toss and turn your way through another sleepless night. Pay attention to those symptoms. Start a journal to track them, if you can find the root cause, treat it, if not, work on better symptom management with your health team.
Be Honest About Your Symptoms
Listening to your body will not do you much good if you don’t share what it is telling you. Life is a team sport. Your loved ones, medical team, employer, friends…none of them can be a supportive member of your team if you are not being honest with them. Think about the person you love most of all. Now, imagine them quietly suffering alone. How does that make you feel? Do you want them to lie to you, saving the tears and frustration for themselves or would you rather they share their woes so you can help lighten their burden? If it’s love, and you are not a grouch, you probably want them to share so you can help them. So, why are you denying them the opportunity to help you? Be honest about what you can do and what you cannot manage, about the symptoms that bring you to your knees and the rough days. Let them be there for you as you would want to be there for them.
Work on Your Balance
The most challenging aspect of life with autoimmune diseases is learning how to balance the needs of your body with those of life. In busy industrial nations, where self-worth is tied tightly to daily productivity, that can be extremely hard. We’ve been taught that hard work is a virtue and resting is, well, not. With the massive list of all that society has agreed we should all be capable of juggling, it is easy to see how tossing something like a demanding health condition into the act might cause all of the pins to drop. Now you can attempt to pick all those pins up and carry on, the show must go on after all, but…if week after week the same pins are lying in a heap on the floor, you may need to consider changing the act up a bit. Finding the balance between what you think you should be able to do, and what you actually can achieve will not only make it more manageable, it will also make you look and feel more successful. The key to any successful juggling act after all is not picking up the knives before you’ve mastered juggling those pins.
Calm Down
Last but certainly not least, you must calm down! Stress is the number one most common trigger among autoimmune diseases. Luckily, if you are doing a good job of communicating what you need, asking for help, and working toward achieving balance you are also reducing your stress. Consider the other areas of your life that cause stress. Is there anything you can change to reduce those stressors? Can you avoid that situation or person who causes your blood pressure to rise? Is there a less stressful job out there for you? What changes can you make that would reduce your stress?
For the stress you can’t escape, what will you do to manage the stress? Exercise, meditation, writing, time in nature, breathing, all of these help reduce stress, choose a few stress relieving strategies to add into your daily routine.
Life with an autoimmune disease is no walk in the park. It is challenging, frustrating, and difficult to manage a body that fights itself. Learning how to support ourselves and finding our balance can go a long way toward living well with autoimmune disease.
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.
