Tenacious ME
Tackling disabling autoimmune disease with obstinance and humor.
Foggy Days
“And when the fog’s over and the stars and the moon come out at night it’ll be a beautiful sight.”– Jack Kerouac
I woke up in a fog this morning. Not outside, outside is bright and sunny and cold as can be! The fog I’m in is in my head, though saying that doesn’t at all accurately describe where I am right now. It’s body fog. Or fog…but with quicksand too? That feels closer.
It’s like being awake and a sleep. Like sleepwalking with your eyes open. I’m upright and functioning, but everything is slow, most of all my poor, sleepy brain! The thoughts are still rolling around in there, but most of what comes through is lost just as quickly. And recall? Just don’t ask. I can google that for you, but get information from my brain today? Nope. I mean, maybe, but the odds really aren’t in favor of success here.
Luckily, this is a foggy day that was in my forecast. I saw it coming. It is my 100% dependable day after infusion foggy day. I’m not sure what it is about the wonderfully helpful medicine I get every month, but it seriously knocks me off my game for a good 24 hours. So, now I plan for it. I prepare for the fog bank to descend. So I can just sit in the fog and be okay with that.
The art of Taking Stock
“Without proper self-evaluation, failure is inevitable.” John Wooden
When I was first diagnosed with a chronic disease, I have to admit, I was quite naive. No, naive is definitely not a word that fits me (HA!) I guess what I really mean is unrealistic. I knew RA. I’d begun researching all of the likely suspects for my symptoms and had in fact put RA on the “please don’t let it be that” list. I’d watched it ravage before. I knew the gnarled body that was my destiny, or I thought I did. Looking back now, what I thought I knew was laughable. I knew very little about the beast named RA. And yet, in a way, we were already quite well acquainted.
That’s how it is with chronic disease. No one wakes one morning with a chronic disease. It’s not like a cold or flu. You don’t catch it today and exhibit symptoms within days. Chronic disease starts with gradual changes. Symptoms appear slowly, over time. They often ebb and flow in ways that seem senseless. By the time the patient and Doctor have seen the pattern and reached diagnosis, the disease has become an old, if somewhat irritating friend to the patient. You’ve learned to live with it, like the quirks of a loved one hardly noticed over time. For, just like living with a quirky loved one, you’ve learned to ignore the quirks. To live with them. To play through the pain, fatigue, and brain-fog. The familial nature of the disease is both your biggest ally and your largest foe.
The gradual nature of chronic disease means you can and do learn to live with many symptoms. Make no mistake, being able to live with the symptoms of a chronic disease is a massive blessing. A necessity for sane survival with said disease. I am grateful for my ability to cope every single day. But, hind sight being 20/20, I also see many times that finely tuned coping mechanism, that belief that feeling that is just normal for me, caused me to ignore things I should not have. Do not be fooled, slow and sneaky though it may be, chronic disease is doing damage.
Successful disease management requires learning the art of taking stock. Of honestly recognizing how you are doing, how that differs from how you have been, and where you need to be. Recognizing and responding to the things that cause it to act out. Being present and aware enough to know when something is helpful and when it is not. The lesson is listening to your body 101 and you are both pupil and subject.
Becoming a Goal Crusher
“A goal is not always meant to be reached, it often serves simply as something to aim at.” – Bruce Lee
It’s that time of year again. The time when everyone is working on some goal or other for the year. Weight loss, giving up vices, getting more exercise, being more involved in the community, the goals are as varied as the people trying to reach them. The common thread being, making a positive change in your life.
The focus is on the things you need to do to make that change happen. There is an ultimate goal set, and we set forth determined to accomplish it. In theory, wonderful plan. In reality…if it were as easy as saying I want to do that, you’d have done it already! So how do we turn a resolution into the actual lifestyle change we are looking for?
The first, and likely most important step, is also the one we are most likely to skip. Honest assessment. How did you get here? The pounds, the bad habit, none of that appeared overnight. SO, how did that happen? (Hint, you were definitely involved!) Why do you smoke/eat/drink/watch too much tv? How has that been serving you? Is it a crutch or just something you do because you’ve gotten used to doing it? The latter requires simple retraining, the former, a whole lot more honest assessment and work. Crutches can’t just be set aside. You will only reach for another when you wobble again. (Ask me how I know.) So be real with yourself. Don’t kick yourself (too much) for the choices that got you here, but be honest with yourself about what they were. They WILL be popping up to derail your goal. Knowing them ahead of time will help you make a plan to dodge them when they do.
Step two, get support!! Confession, I SUCK at this. Reaching out for assistance requires two things I am not great at, admitting I need help and inviting someone in to see my mess. Not at all in my comfort zone. I am private and independent. I have learned that I also need help. No matter what you are trying to accomplish, someone has experience you can benefit from. Experience you will never benefit from if you don’t ask. They have answers you need, advice that can serve you and, perhaps most important of all, the kind of understanding only experience can bring. So, reach out. Find the kind of support that fits you. You will be so much more successful if you do.
The next step is setting REALISTIC goals. I understand that you want to loose 100lbs, run a marathon, and 1000 other big goals. Big goals are great. But they sure do feel hard to reach! Break them down into smaller parts. Set mini goals. Walk before you run (seriously! Your muscles will thank you!). Making them into small bits, helps you track progress AND feel like you are getting somewhere. Humans need to see the reward to keep doing hard work. Set yourself up with chances to celebrate the journey.
Speaking of rewards, I wholeheartedly believe that the goal you are reaching for is it’s own reward. I also know, the more rewarding something is, the harder we will work for it! So, when you set those mini goals, plan some rewards for hitting them. Treat yourself for being so awesome! But, proceed with caution. If the reward for eating clean all week is a giant binge of garbage food…the reward may ultimately do more harm than good. Choose rewards that help you celebrate your awesomeness without dragging you off the wagon you’ve been working so very hard to stay aboard!
The final and perhaps most important step for successfully crushing any goal, more honest assessment. Setting regular times to check in with yourself and compare where you are today vs where you were when you started can help keep the inspiration going. What have you done great at? Where are you stumbling? Can you see that goal getting closer? How about those mini goals? Remember, this is a journey and a learning experience. It might look nothing like you thought it would. You might have to recalculate the route a few times to get to the destination. But, you can definitely get there, one little step at a time.
The Battle for Healthcare
“You may have to fight a battle more than once to win it.”
– Margaret Thatcher
Once upon a time there was a girl who hurt all over. She went to her Doctor, whom she trusted, in search of help. The competent Doctor figured out what ailed her and they worked together to formulate a course of treatment that included medications for symptom management and holistic measures such as nutrition, exercise, and rest. The girl healed, then lived happily ever after.
Nice fairy tale, huh? Sadly, the story goes a little more like this-
Once upon a time, there was a girl who hurt all over. She went to her Doctor, in search of help. Her Doctor told her to take pain medication and it would get better. It did not. Next she went to the Doctor recommended by a good friend, the result was the same. No answers, another pain prescription, and no healing. She gave up, deciding pain must just be part of life.
Years went by, pain came and went, she lived, she suffered, she carried on with life. Occasionally she would seek out a recommended physician and try again for answers. Sometimes she even got a diagnosis. Sadly the diagnosis was always wrong, and so it went on for a decade.
One damp, dreary day, the girl awoke to find her hand would not open. Panic set in, and the push for answers began again, this time with ferocity. This time she would not give up. This time she would push and question her doctor until the truth was discovered. And she did. And a diagnosis was finally found.
Knowing what had been silently destroying her felt wonderful and terrible all at once. The girl knew this disease. She’d watched it hungrily consume before. She feared the future, but she was not a quitter, and so, she prepared to fight.
She did what any research-minded, science nerd would. She took to the internet and began reading all she could. She sought out a specialist to help her battle this beast. She tried all of the remedies, old and new. She found things that helped soothe symptoms, but did not put the beast back to sleep. She changed her lifestyle in ways large and small. Over time, she learned to listen to her body, to nourish herself, to rest, to set priorities and to love herself.
All the while, she followed the guidance of those who claim to specialize in her disease. She took their advice and their medications. She became frustrated again and again at the slow progress of her treatment plan. After all, this girl was on fire, watching herself being consumed, anything short of calling out all the firefighters seemed risky to her.
One day, she realized, when it comes to medicine, dispatch is out to lunch. Unless YOU shout fire very loudly, no one else is joining the fight. So she decided to start putting together a better brigade herself. She went back to her doctor and insisted on referrals for rehabers and renovators. Each new team member exclaimed they should have been called to the fire sooner. Each shared with her the extent of her damage and the things that could have prevented it. She became disappointed and angry at her specialists. At all the doctors who had let the fire consume instead of trying to minimize the damage. At a system in which, you have to become an expert on your disease and fight for treatment. At a system so focused on generating money it has forgotten about healing humans.
The moral of this sadly true story? Easy, as disappointed as I am to say it, medicine is broken. It is fragmented and frustrating. As we rely more and more on specialists, we get less and less whole person care. Rare is the doctor who suggests you see someone else in addition to what they are offering you. That would require admitting you need more than they can give. I don’t know if it is ego or ignorance that is causing this issue. I do know, until it changes, if you are not battling for healthcare, you are not getting the care you need.
Drinks with Friends (and other things masochists might do)
Life is beautiful and living is pain.
-Hunter S. Thompson
You know those mornings when the alarm goes off and you find yourself suddenly extremely aware of the poor choices that have lead to the hollowed out barely human feeling you have? I’ve had my share of those. They used to follow a night of too much alcohol paired with too little sleep.
Thanks to R.A., they now come anytime I overdo it, at all. Now they come with all over body aches and stiff, tender joints.
Just like the hungover me from younger years I always swear that I will never do that to myself again. Then, life happens, events align. I am faced with the option of enjoying the events laid before me and paying later, or abstaining and missing out on some of the good times.
Those who know me well already know what my choice will be 9 out of 10 times, play now, pay later.
That’s not to say there are not things I say no to. There are things I just can’t do right now. There are foods that are just not worth the pain. There are places I can’t realistically go, even if I really, really want to. But mostly, if I think I can, I will. Even if it hurts.
Because life is pain surrounded by beauty. It is the times spent with good family/friends, good food and good fun that make my life beautiful.
So I will say yes to long nights with good friends, time at camp, days and nights spent beneath the sky, road trips, barbecues, and drinks with friends. Because living life is totally worth the recovery time.
Learning to Listen (so your body doesn’t have to scream)
“You need to listen to your body because your body is listening to you.”
-Phil McGraw
There seem to be two general types of people when it comes to pain. Those who reach for the Tylenol bottle or other preferred pain treatment method when they have a bit of pain and those who resist it until they are barely able to function. I’m one of the latter.
Now, don’t get me wrong, there is definitely some benefit to being too stubborn to treat your symptoms. Like pain tolerance. Mine is pretty awesome. Like had no idea I was in labor, 18mm kidney stone felt like a stomach bug kinda awesome.
I can get through just about anything. Of course, that is also a huge problem. Because I can get through just about anything. So I do.
Sometimes, for little things that will go away, this is a wonderful thing. Living with a chronic degenerative disease, it’s a godsend. Without it I would certainly spend much of my time as a puddle on the floor. Even with it, I sometimes do.
When the issue is something that won’t pass, like, say that massive kidney stone? Then it becomes a barrier that leads to so much more time spent suffering than necessary. It means months of suffering with bouts of “stomach aches” that sent me to bed when I just needed a stone removed. It means years of not pushing for proper diagnosis and treatment of chronic degenerative disease. It means living with remodeled joint structure because of delayed diagnosis and because even after diagnosis I did not take my symptoms serious enough to really throw all that I could into treating the disease nearly soon enough.
The moral of the story? Just because you CAN live with symptoms, doesn’t mean you SHOULD.
Knowing what to ignore and what to treat comes from being in tune with your body. Seems simple enough, but really, few of us truly are aware of all the signals we are being sent everyday about the way we nourish and care for our being.
That heartburn after a meal, the nausea after a long night, feeling worn thin, frequent headaches, constant aches or pains, all of these can be signs of serious diseases or disorders on the horizon. It is your body’s way of saying, “hey, something isn’t right in here. Help!”
Learning to listen to those little symptoms as they start to pop up can delay or prevent the onset of things like ulcers, heart disease, and diabetes. Things that don’t make your body signal so much as scream, “HEY, SOMETHING IS SERIOUSLY WRONG, SEND HELP!” Don’t let it get so bad that it has to shout to get your attention.
I got lucky. My wake-up call came in the form of an 18mm kidney stone. It was able to be broken up and removed, with no lasting damage. Had I continued to ignore it? I might be sitting here typing this with one less kidney. Worse, I could have gotten sepsis and died.
So I am learning to listen. And even more important, especially for the stubborn, I am learning to act. I don’t suffer with heartburn, I rest when I need to, and I try to avoid the things that make me feel bad. I seek testing and treatment for the things small changes in my behavior and diet don’t fix. I take new pain seriously, knowing for me, if it is large enough to have my attention, it is something I need to look into.
Listening gives me the opportunity to heal. Living with chronic degenerative disease, there is no greater gift than the chance to heal.
Learning to be Honest
“Honesty is the first chapter in the book of wisdom.”
-Thomas Jefferson
Honesty is the best policy so the saying goes. And yet, is it?
Well, not always, right? I mean we all have a whole laundry list of social customs in which honesty is not the central focus. Be honest, but only if it’s nice, doesn’t cause worry, isn’t potentially offensive…
So tell the truth, sort of.
It’s a habit and custom instilled since childhood. It’s also a serious handicap to anyone who is struggling with disability (or anything). Nice answers often don’t reflect the truth. But they also often don’t get you what you need.
How are you?
Now we all know the answer to that question is expected to fall somewhere between good and not bad. No one wants a laundry list of our woes. (Nor a diatribe about the glories of our life.) But good and not bad often don’t accurately describe how someone who is battling life feels.
More importantly, answering this question dishonestly fails to let those around you know you need help. Or why you are in a shit mood. Or that you might need an ear to listen. Or a shoulder to lean on. We all need that from time to time. So why lie? Honesty really is the best policy.
So I am learning to be more honest. I am learning to admit when I am having a bad day. I won’t likely ever be the sort to tell anyone all my current woes…but I am learning to at least say today is not an easy day.
Making that shift, from always saying I’m good or ok, to admitting I feel kind of like a bag of grinding bones today has helped me and those around me. It helps me because I get the offers of help I need but am unlikely to ask for. (What can I say, stubborn should be my middle name.)
It helps the people around me, the people I love, to understand why I’m behaving like I am. Maybe I’m cranky, or seem uninterested in what we are doing, or bailed on plans we made. Being honest means they know, it’s not them, it’s me.
Being honest with others is also helping me to be more honest with myself. Being honest with myself means allowing myself to say no when I need to. Resting when I need rest. Treating myself with the same love and understanding that those around me project.
And honesty that brings love and understanding? Well that just might be the most empowering honesty of all.
Finding a New Path
Two roads diverged in a wood, and I—I took the one less traveled by,And that has made all the difference.Robert Frost- The Road Not Taken
When you have a chronic disease, the road to disability is an unpaved country road not found on any map. Sure all the old-timers can tell you just how you get there from here but no one knows how long it is exactly or just when you should expect that hairpin turn.
So you do what any sane person with a destination and no map does, you listen to the directions, put one foot in front of the other and try to stay on the path. Unfortunately, this particular path has forks (and occasionally disappears into a bank of thick fog).
Being on the road to disability means your abilities and dreams are always in flux, What sounds like a dream today might be a complete nightmare tomorrow. The things that once soothed might now be out of reach. And so becoming disabled is a process that requires seemingly endless adjustments. As ability becomes disability. (That word. I hate that word.)
The last few years have really hammered this fact home for me. Don’t get me wrong, at no point did my life smoothly follow some nicely mapped out route. But before rheumatoid arthritis took the wheel I at least knew I was in control, and the possibilities were limitless. With a can-do attitude, some hard work, and a little innovation anything is possible. Things I have always believed 100%. Turns out nothing is always true. Even the powers of mind, might, and determination. They don’t win every battle.
And so, I’m learning to adjust. I’m learning to be a person who accepts their limitations. Those who love my stubborn ass know just what an adjustment that is. I’m still not great at it and do things I should not daily, because I think I should be able to.
But hey, sometimes I can says stubborn me. And she’s right. Did I mention the path loops back around? In times of calm, ra patients gain strength and mobility. Like little injections of hope in every joint.
Then the disease flares and you are reminded what road you are actually on. As I come to accept the road I’ve been traveling and admit the damage it has done, I find myself, again and again, searching for the “right” branch in my pathway.
Being someone who doesn’t like to admit her limitations, this often means taking paths that end in a roadblock or having to double back, or carry on stubbornly and strain something. Confession, I’m in the latter situation more than the others. I’m working on learning the art of retreat.
I’m learning that I do have limitations and accepting them will hurt less than living in denial. With those limits as a framework, I am finding a new pathway. Because being disabled will not stop me from finding my ability.
The Double Edged Sword Of Knowledge: The benefits and drawbacks of being “in the know”
“Unless we learn to know ourselves, we run the danger of destroying ourselves.”
― Ja A. Jahannes, WordSong Poets
As a lover of learning and a science nut, I have always sought and craved Information. As a chronic degenerative disease sufferer I have come to know it as double edged sword. There is still power in knowing, surely. But sometimes, the knowing steals the wind from your sails as you face the reality of degenerative disease.
I will admit, on more than one occasion, the fear of the knowing has stopped me from getting the testing and imaging done that I needed. After all, until I’ve seen the damage in black and white, it’s not official, right? Until that radiologists report hits the hands of my doctor, I just have some mysterious symptoms that could be no more than inflammation. And so, in the not knowing, there is solace, there is endless hope, but also, there is pain. Occasionally, those symptoms will subside on their own. Usually they do not and I eventually submit to the testing I’ve known I needed all along.
Next comes the “fun” part. The waiting. Despite my cool and calm facade I am not the most patient person in the world. Especially when it comes to test results. Once I’ve decided I want to know, I want to know now. Like NOW. Hell, yesterday would be better! Once I have flipped that switch from ignore it to action mode, it is time to be in the know. I’m ready to tackle the issue, so tell me the details doc.
Then come the results. Sometimes they are not what I dreaded. The excruciating foot pain I was sure was a sign of degeneration in that area of my foot was nothing but a ball of nerves. Simple change of footwear, stand a bit different to relieve pressure on that area, if all else fails a quick and easy outpatient surgery, snip, snip, good to go. No thorns or spikes from that diagnosis. (No heavy pills to swallow even.)
The same with the hip pain I have been struggling with. It’s “just swelling and inflammation associated with rheumatoid arthritis”. No remodeling of the bones, no spikes, no problem. Hope. Knowing the swelling will reduce and the hip will swing freely again. Knowing continuing to do what I’m doing and upping the anti with more anti inflammatories and a bit of pt will get it back on track.
Then come the results of the elbow imaging. Ah, here is the sword, open up and swallow! Remodeling, narrowing of joint spaces, and oh yeah, literal spikes! Several new medical terms and web pages later, I have a clear but somewhat depressing picture of the reality of the state of my elbow. It is damaged. It won’t straighten out because it can’t do that anymore. And the pain won’t likely leave anytime soon. They can probably grind off the spikes. But narrowed is narrowed and I’m stuck with that damage.
Poof goes the hope. Out come the tears. For a minute (maybe 5). The benefit of being a half glass is better than no glass at all kind of thinker. Hope always comes back. And that stubborn willful side that will not quit. I love that side of me. She is the warrior in me. Without her I would be stranded like a mastless sailboat on the sea. And so I wipe the tears, go back into research mode, and start to form a new plan. Because knowledge IS power. And there is always something one can DO to cope with or change their situation. So I’ll swallow that double edged sword. Because like every sword swallower past or present, I am a fierce, fearless fighter.
Rainy Day Remedies
“Be still, sad heart! and cease repining;
Behind the clouds is the sun still shining;
Thy fate is the common fate of all,
Into each life some rain must fall,
Some days must be dark and dreary.”Henry Wadsworth Longfellow-The Rainy Day
It’s a rainy, drippy morning here in Maine. After the sweltering hot humid days we’ve suffered through the last few weeks, I welcome the cooler air. At the same time, my body is reminding me how little I have come to love rainy days!
There is no denying, anyone with any sort of arthritis will tell you, rain means pain. With an average of 40 inches of rain and 67 inches of snow per year, that is a lot of weather induced pain days! The result? This pharmaceutical wary chic has learned a whole lot of ways to soothe arthritis pain! Here’s a rundown of some of my favorite ways to quiet cranky joints.
1. Turn up the Heat-
If you have ever let an arthritic joint get too cold you know just how much cold is the enemy! Applying heat packs to aching joints, dressing to stay warm, and cuddling up in a heated throw are all great ways to keep joints warm and toasty. Who doesn’t like a warm toasty joint?
2. Mighty Mighty Peppermint-
As an herb or an oil, peppermint is one of my favorite medicinal plants. Steep peppermint leaves in water (or add a few drops of peppermint oil) then soak a towel in the peppermint water for an easy and soothing peppermint compress. I also keep peppermint oil blended with avocado oil in a handy roller bottle for topical application.
3. Turmeric to the Rescue-
The anti-inflammatory powers of turmeric are pretty well known at this point! Part of my daily regimen for inflammation fighting, I always have a little extra on drizzly days!
4. Soak it out-
When it comes to a relaxing way to soothe aches and pains, nothing beats a nice long soak in a comfy tub. Even more-so if you add Epsom salts and some soothing herbs like eucalyptus and lavender.
5. Time for tea-
My cupboard is stocked with a variety of medicinal teas at all times. Ginger, cinnamon, turmeric, peppermint, willow bark, cloves, nettles and st john’s wort are just a few of the helpful plants that can be found in tea form. Hot mugs are a bonus remedy if you have achy hands, wrap them around the mug and let the soothing heat seep in!
6. Don’t forget to hydrate-
Hot or cold, dry or rainy, your body needs water to carry away the things that cause it distress! So drink up!
7. Rest is the best!-
In busy lives it is not always possible, I know. But your joints will thank you if you listen to their cries of discomfort and take it easy on them on drippy days! Remind yourself that taking it easy on them when they are inflamed means less pain and erosion later. So, grab a good book, snuggle down in your favorite spot, and take that nap you’ve been daydreaming about!
Tenacious ME 