Tenacious ME
Tackling disabling autoimmune disease with obstinance and humor.
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.
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.
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.
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.
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.
Tenacious ME 