Tenacious ME
Tackling disabling autoimmune disease with obstinance and humor.
Learning to Lean
When you are born stubborn and independent, it is hard to admit when you need help. So, when chronic, disabling disease comes knocking, it can be a particularly challenging house guest to adjust to.
My mother tells me, when I was a small child, offers of assistance with things like tying my shoes where often met with loud cries of “MYSELF” from my tiny, tenacious self. While I have learned to curb the urge to shout about it, that fiercely independent spirit is alive and well. She’s served me well over the years, getting me through college, helping me through whatever road blocks and detours life has sent my way. Facing disabling disease as a fiercely independent person however, is not so amazing. In the face of disabling disease, that independent spirit can become a road block itself.
I knew when I was diagnosed with Rheumatoid Arthritis (RA) that it is a chronic degenerative disease, meaning it isn’t going anywhere and it’s going to slowly destroy stuff. I knew eventually I’d be faced with limitations. Eventually. I wouldn’t say I was okay with the idea, truthfully, I was crushed, but I did at least believe I’d be an old lady by then.
In walks reality, the eternal bubble-burster. Bringing with it fun facts like my RA is the very aggressive type and oh, by the way, sounds like it started in your teens so you’re quite a bit farther down the road than you thought. Turns out, as far as RA is concerned, I am already an old lady. At the very least, the arthritis remodeling is way ahead of schedule.
So, along comes disability. Remodeled and disfigured joints that just can’t do what I want them to. Now Ms. Independent has to learn to accept that she needs help, and then learn to ask for it. Over and over again. It is not an easy transition. I’m not sure I will ever be fully comfortable with it, to be honest.
Asking my people (and complete strangers) for help, however, feels like a very small challenge compared to that of using assistive devices. My Dr suggested a cane 6 months before I bought one. I didn’t want to need that, so I avoided using one. Seems silly if you’ve never had to face it. Is silly really. If you need a cane, you should obviously use one, but making the choice to pick up the cane was a big step for me. It was admitting that I need help. It was accepting that damage has been done. To my stubborn, independent side it felt like a massive defeat, and it announced to the world that I am broken.
As the RA continues to slow me down, I’ve had to learn to lean. On a cane. On a walker. On the arms of my loved ones. On two crutches. Three years later, I am accustomed to my trusty sticks, but secretly? I still believe someday I might not need them.
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Anxiety and Intuition
Anxiety and Intuition. Has kind of a nice ring to it, flows well, doesn’t it? Someone who didn’t speak English might think that was the title of some classic love story. A tale of a love that overcomes some epic struggle. Unfortunately, they are the epic struggle, inside my brain, either competing with or feeding off, each other. Both scenarios are challenging.
When anxiety opposes intuition, the battle is a series of small skirmishes. With anxiety holding up some what if, some might have, some worry, and intuition calmly and rationally (with logic whispering words of approval and support in her ear) debunking all that anxiety tosses at her, often as quickly as anxiety can whip it out for debate. With intuition as an opponent, anxiety cannot win. Eventually, anxiety will tire of digging for new supporting information and concede that intuition is probably correct, retreating to regroup and find more on that subject (or something else to worry about). It is an endless cycle, an infinite, loping dance. While anxiety appears to take the lead, intuition, with the help of her sisters logic and reason, will eventually gain control. More dangerous, by far, are the times anxiety and intuition are on the same page.
When anxiety and intuition agree? That is when the true challenge comes. The pair of them together can drag one down the rabbit hole into the darkest depths. Unfortunately, this happens anytime intuition pings on something negative. The worse the inkling, the quicker anxiety is to chime in, “yes, yes, oh definitely, how wonderfully terrible.” Give the pair of them some supporting facts, and they will open a pit of despair so deep, I need every tool I know how to use to climb back out. That happened at a doctor’s appointment this week, or catalyzed there, I suppose, is more accurate. They began to team up on me a while back, and, luckily, the pinnacle of their hysteria didn’t hit me until the wee hours of the night, when they woke me in a frenzy.
For a few months now, I have not felt right. If you know me and my medical issues, you might be laughing and saying, well, you aren’t quite right, and yes, that is true. On the best day I’m definitely a solid mess, but something is wrong in a new way. Intuition has some ideas. Or is that anxiety? See, when they team up, it can become really hard to tell which voice is which, and who started this whole mess anyway? Did intuition throw the idea on the table first, or is this one of those rare occasions when anxiety triggered intuition and gave it a push? It is a chicken vs egg kind of question there is no hope of answering at this point, the Doctor just said the exact word this pair have been whispering about for months.
There it is, manifesting itself outside of my head. This time it definitely didn’t come from my anxious mind. My heart leaps and falls. This is not the only thing he says, of course, there are other things that could be causing my issues, but those blur into the background as my mind locks onto that one word. My mind races through ignored symptoms that I’ve lived with for I cant honestly say how long. How long have I been having these issues? The fear stabs deeper as my mind casts back, seeking the start. It’s far. Excellent coping skills and symptom management strategies have let me ignore this for months. A cacophony of thoughts attack me one after another in an endless barrage, procedures skipped, appointments missed, the long list of dangerous medications I’ve used in my battle.
Telling myself i cannot panic until after I have answers, (pretty funny lie for someone with anxiety) I struggle to focus on making a plan and leave the office with a mind abuzz with questions I’m not ready to wrestle with. The one thing I’m sure of, Intuition and Anxiety are definitely on the same page now.
Knowing the powerfully destructive force the two become when united, I shift very quickly into anxiety management mode, pulling tools from the kit I’ve gathered over the years, seeking solace so I can get through the rest of the day without spreading my panic to loved ones. I’ve found myself strapped to an anxiety and intuition fueled bull, if I don’t get on top of it, it will kick my ass. So, hold on tight and make it my bitch it is, at least until I know where we are going.
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Wait, hope, work
One of the hardest parts of a failing body, for me, has been the many ways it limits my ability to do things. I miss going for a stroll in the woods to calm my nerves, whenever the need arose. Late afternoons spent wandering around my yard, weeding plants, while chatting on the phone. The freedom of climbing into the car and driving to the shore to clear my head. I even miss spring cleaning, scrubbing, dusting and polishing, and the exhaustion and satisfaction of a job well done.
Long gone are the dexterous hands that could craft and fashion things for necessity or whimsy. The powerful, capable body that propelled me through the dancing waters and up hillsides for vistas that stole what was left of my breath, now struggles with daily life. I miss an active life, pining for it, like a long-lost lover, always hoping some magical twist of fate will send it back my way.
Some days that hope seems fanciful and beyond reach, others the paths that might allow some old freedoms are visible, if faint. Because whatever else disability might be, it is, always constraining, limiting. Yes, I know there are a million ways determined, disabled folks have found to get around their limitations. Living in an age with so much amazing technology is a blessing. Yet, most adaptations require not just mindset but also means. I’d have an awesome off-roading power chair to carry me to the woods tomorrow if it were up to me. But, realistically, that is not something that is so easy to obtain. (It hardly even exists, sadly.)
SO I wait, and I hope, and I work. I wait for the day when this disease is in check, for the surgeries to repair the damage, for the healing that will allow me to grow strong and capable again. I hope for a future without such limitations, for the means to change my situation, and the strength and determination to get me there. I work to strengthen and protect the body I have left, to create new, loving habits, to find the pathways that will lead me back to my old self, capable, adventurous, inventive, industrious, tenacious ME.
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Anxious ME
I’m a nervous mess, and it’s my own fault! There, I said it. Out loud.
That’s right, I’m a ball of anxiety this week. Almost entirely self-inflicted anxiety. I made the choice to step out of my comfort zone, and now, here I am looking for shelter and wondering why I wandered out here where I’m so exposed.
Hermit life was working. Sure I get lonely and bored, living the home-bound hermit life, but I also love the infrequency of my social anxiety flare ups. Something most people probably don’t realize about me, I have social anxiety. I hide it really well. Mostly by avoiding situations that make me want to bolt, vomit, or both.
While social avoidance certainly does minimize the frequency of social anxiety episodes, it isn’t doing a thing to make it actually less severe. SO, I decided I want to let it go, to outgrow it once and for all. To make myself face it and tame it. It seemed like a really great plan too, until the reality of what I’ve done started to sink in.
I planned an event and invited the entire community. (Gulp) Alone. (What was I thinking?) I decided I wanted to host a community family game night to help raise a little money for a neighbor in need, while promoting my side hustle, without being a sales lady. Clever, right?
It would be, if not for the voice in my head that’s been non-stop for the last week…”It’s getting closer”, “what if no one shows up”, “what if a ton of people show up”, “what if you don’t have enough food”, “what if it’s a total flop”, “what will people think”..the questions and concerns from that sector have been non stop and NOT helpful.
That’s the trouble with anxiety, all the worrying in the world won’t solve problems, real or imagined. It is one of the most useless things my brain does. It makes me feel small and out of control. Less than. Not enough. Especially when I have to face ‘the masses’.
Of course, that’s why I chose to push my limits by having an event, I knew it would seriously push me out of my comfort zone. Like I said, this is self inflicted. I made this bed, now I must lie in it (ironic, as sleep is laughable when anxieties run high).
So, lie in it I shall. In three days, the event will be here.
I’m sure it will be fun. Well, part of me is anyway. The part of me that is confident and fun-loving knows that one cannot really fail at hosting family game night. If anyone at all shows up, fun will be had. With a few confirmed attendees who love me, I know that will be so.
Now if only I could convince my anxious side of what reasonable me knows.
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My Tribe
There are good ships, and there are wood ships,
The ships that sail the sea.
But the best ships, are friendships,
And may they always be.-Irish Proverb
In a life that has gone anything but straight and easy, I am incredibly blessed by the tribe of family and friends who love me so well. I always knew I was a lucky girl, to be loved so, by such wonderful folk, but I never really appreciated that as deeply as I do now. Always there with a helping hand, a steady elbow, and best of all kindness and understanding, my tribe gets me through even the toughest days.
Without this wonderfully varied, loving, foolish tribe of mine, I would be adrift on an endless sea of depression. They are my lighthouse, saving me from dashing myself upon the ledges, my safe harbor in stormy weather, my life raft when the ship goes down. As I drift along on the tumultuous sea of life, they are my sanctuary.
My tribe is solid full of people who lift me up on the down days. People who cheer my every success and listen to every fear and failure. They get me to appointments, take me on trips, bring me food and beverages, help me peddle books, and jump in when I have a big idea that needs many hands to become a reality. They talk me down when I’m overwhelmed and lift me up when I’m floundering. They remind me that I am awesome when I forget. They are my sounding boards, my cheerleaders, my allies in life, my tribe.
Have you found your tribe? People who love you. People who lift you. I hope you all have. You just never know when you will need that life raft.
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What does depression look like?
“Every man has his secret sorrows which the world knows not; and often times we call a man cold when he is only sad.” ― Henry Wadsworth Longfellow
I have been seeing these post on social media, probably for a couple of years now. The more I see them, the more they bother me. Various Memes, often featuring a seemingly happy celebrity like Robin Williams, urging you to check on your happy friends because they might be secretly depressed. As though a simple inquiry is all it takes for a person who is faking happy to confess that they are suicidal. As though what killed those smiling icons was neglect of friends and family and not their own personal demons. It’s survivors guilt gone viral, and it is both alarming and disgusting to me.
Let me make something perfectly clear, if you have lost someone to suicide, drug overdose, or some other poor choice they made, IT IS NOT YOUR FAULT. I can’t say that enough. That baggage is not yours to carry, please, put it down. The what-ifs, the gut-gnawing guilt, the should-haves…none of it will bring them back, all of it places their burden squarely on your shoulders. It isn’t yours, put it down.
Are your friends, even the seemingly happy ones, struggling with heavy emotions? I am going to go out on a limb here and say, yes. Life is full of expectations, pressures from inside and out, disappointments, tragedy, heartbreak, and all of the complicated emotions that come along for the ride. Everyone you have ever met, everyone you ever will meet, struggles with sadness, depression, and self doubt at some time in their lives.
The ways people deal with their emotions are as varied as they are. There are those who tell their woes to everyone they meet, and those who can hardly even consider them themselves, let alone share. There are people who face the world with depression written all over their face, and those who hide it behind smiles and witty comebacks. Those who laugh and those who cry. Those who sleep and those who can’t be still. People who turn to drugs and people who turn to exercise. Our reactions and crutches, being as varied as we are, there is really nothing we can outwardly see that “looks like depression”.
That makes this notion of being official mental health monitor for everyone you know absolutely preposterous. I do not think that will help anyone, in fact, I have experienced firsthand the emotional stress of feeling responsible for saving someone I love from themselves. It isn’t healthy. It doesn’t save anyone. It’s very much like tying your boat to a ship that is taking on water, if things don’t change, everyone is going down together.
So, depression, everyone has it, and it’s both unpredictable and invisible, depressing? I don’t think it has to be. I think admitting that to ourselves might just push us in the direction we’ve needed to go all along. The first step to solving any issue is to bring it out into the light. Drag it out of the closet, perch it in the middle of the room, and examine it. Why are we struggling? How can we cope with it better? Why are we so reluctant to talk about something we all share?
The time for silent suffering is well past. It’s time for a new approach. For some honesty. Time to remove the stigma. Time to turn our concern from reaching people in the darkness to eliminating the dark.
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You Are What You Eat
“The only way to keep your health is to eat what you don’t want, drink what you don’t like, and do what you’d rather not.” –Mark Twain
You are what you eat. I’m sorry, it’s true. I agree, I want to just eat all of the yummy things we humans have developed over the centuries, with no consequences! There is so much delightful and delicious food in this world! Why would I limit myself to the “healthy stuff” when there are so many other options?
In a word life. As in, you only get the one. As in quality of life. I want some, don’t you? So, as much as I’d love to eat anything I want all of the time, I’ve come to understand that I just can’t do that. Not if I want a long and active life, a healthy life. And boy oh boy, do I ever want that.
So, here I go, giving up some stuff I love for the love of my health. I’ve done it before, various elimination diets, designed to help identify foods that add to inflammation and disease activity. Sometimes badly, other times a little better. I’ve even applied some of the lessons learned, a little, here and there.
This time, something is different. I feel differently about the process. It doesn’t feel limiting and restrictive. It is nourishing and I am loving every single bite I put in my body. For the most part, I am not missing the foods I pretty much lived on before. I mean, don’t get me wrong, I want a cookie, a piece of cheese, and a nice square of delicious chocolate, but not as much as I want to feel better. Not as much as I want to heal.
I’ve had a wonderful mind shift. A willpower upgrade. I can, and I will and it feels fabulous! I feel fabulous! Broken, dinged up, in need of a few new parts, but compared to how I have been? Better by miles. My inflammation is lower than it has been in years. Visibly lower. My hands are adorned with skinny (slightly misshapen) fingers instead of fat little sausages. My mind is clearer, even on the foggier days. My energy is up and with it my motivation. All because I’ve changed my diet for a couple of weeks.
That’s all it has taken, two weeks. Two weeks avoiding grains, dairy, sugar, legumes, and nightshades. My take on the Whole30, because, if you know me you already know, I don’t do anything by the book! So I added nightshades to my elimination list, knowing they are frequently a problem for autoimmune sufferers, as are the rest. Mostly because the easiest time for me to give up tomato sauce is when I can’t eat pasta anyway!
So, two more weeks, then it will be time to find out which of the eliminated foods were causing a ruckus. I have a few suspects. Dairy has been obviously troublesome to me for years. I have limited dairy for a long while now. Sugar is inflammatory, there really isn’t any way around that fact (sorry). I know I shouldn’t eat sugary things. Sometimes I even eat like I know that! As for the rest, only time and reintroduction will tell.
Soon the study will be over and the results will be in. What will I do with that information? I really can’t say until I know what I’m facing. I’d love to say I could walk away from any and all of them for life and never look back. That would be the healthiest choice, but forever is a very long time to say no to cookies and cheese.
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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.
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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.
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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.
Tenacious ME 