The Light

After a tough couple years of starting with losing my health, job, and generally losing my way, I’ve done something radical. I have chosen happiness!

If you had asked me three, four, or even five years ago if I was happy, I would have lied to you. I would have said, absolutely! I have a great job and wonderful home life. Only I had no home life and my work life was a life consuming hell. I was in a constant state of hurrying, overworking, getting sick, and playing catchup- no rest, just repeat. I was in a cloud drifting far from the present moment. When I caught glimpses of the present it was like being electrocuted so, of course, I kept it distant. When the present would creep up I would be fearful and angry with my life. I tried fix things by studying things like A New Earth by Eckhart Tolle, unsuccessfully. I felt I understood his ideas but, I absolutely did not act on it. It hurt. My body was exhausted and painful, everything in my life showed signs of neglect, and I was allowing myself to be abused. It was all my choice. I did not choose to be present or compassionate.

I have been sick with a cold for the past nine days. In the past, when I have gotten sick I am very sulky and grumpy about HAVING to stay home, rest, and recover. It has been one of my greatest fears and frustrations. I had to much to do to tend to my health. I always went back to work too soon which resulted in feeling sick longer- adding to my general feeling of anxiety. This cold has been a bit of a roller coaster. Some days I felt okay and others I felt awful. So for perhaps the first time in my adult life, I just stayed home and rested. It didn’t come without frustration or stress but, it did come with compassion and forgiveness. It is what it is. Let it be.

I know I have said this before but, RA has been a great teacher. It has taught me to be more compassionate to myself which has allowed me to be more compassionate to others as well. It has also taught me to be present and grateful for everything in my life. I can now find the good in most things. The darkest times have shown me the brightest light.

May your happiness and joy increase. May the causes for your happiness increase.

Breaking the Silence

Hello friends. Is anyone even still out there after my extended silence?

You see, I have joined the workforce once again and unlike student teaching, I actually get a paycheck. Rad! I wake up alarmingly early, greet children ranging from K-12 for the day, and arrive home overjoyed to see my husband, critters, and dear friend- my worn-out red couch. Yep, I am a substitute teacher. This was a career choice that was dreaded and horrific until my second day. My first day, I was in a second grade class which fulfilled my feeling of dread. I didn’t know until I arrived but, I was the 5th sub in 8 weeks (a teacher was out on medical leave) and I was recommended to be very strict to get through the day. As you would expect, all 33 kids were completely out of control… tantrums, tattling, screaming, peeing pants… it all happened. Internally, I even had a meltdown. Despite the fact that I committed to three days with these untamed beasts, before noon I decided I would not be back again. I drove home in a trance mixed with frustration, sadness, and love. The love part added confusion into the mix. Once home, I got on the computer to do my daily search for a permanent job. Is Starbucks hiring? I have had a few former students who were employed with them…

Then I found myself reading Harry Wong’s, a spectacular educator who has written numerous books, teaching strategies for the elementary classroom. By the evening I had a plan to get these second graders back on track. Afterall, it’s not their fault they are out of control. In the end, I was with this class for two weeks. These fabulous kids taught me more than I could ever teach them and I sobbed at the end of my last day with them.

Once I plop onto the couch at the end of each day, my body reminds me that I have already overspent my energy for the day. I know if I press forward with other things, I may require a day with the couch tomorrow. And who wants a day on the couch when you could be teaching kids? Not me.

Living a Life with Purpose

With my hands in the air I announce, I’m done. I give in. I surrender.

I had an epiphany last week and it was both utterly amazing and out of this world emotional. I’ve spent my days painting, drawing, studying, reading, writing, planning, and searching. The days go by rapidly and I am overwhelmingly engaged. I search more than I do anything. I wrack my brain until it’s bruised and sore to think. I laugh, smile, frown, and tears stream down my face pouring out an array of emotions. I feel on the verge of insanity but remain sane (I think). Over the years I have successfully ignored the whispers that have tried to give me the answer I needed and then the brick wall came tumbling down. I’ve struggled to understand and haven’t known exactly how to proceed. It still hurts and I continually stumble over the bricks. Since the wall fell the question that has tugged at me is, what is my purpose? Last week the answer came rushing to me and I blushed in my own presence. It has been staring me in the face all this time. All of my life it has been right here in front of me.

I was born feeling that life is both extraordinary and fragile. As a child I spent much of my time with critters both small and big and felt amazed by them all. I also felt the devastation of the untimely deaths of the smallest creatures to those that somehow ended my dinner plate. That spider that was smashed on the floor had one chance and it was taken in an instant based on irrational fear. That beef dinner was actually once a cow, with friends and family, and it ended for a meal. Just like that life is over, forever. I do my best to never be the cause of the end of any creatures life because we all have this in common- we only have this one chance in this life. Over the the years I have tried to teach people compassion toward all creatures. I have taught using tears, sadness, anger, screaming, frustration, empathy, sympathy, and finally surrender.

When I was 10, I cried when a friend had smashed a spider on a wall near her bedroom. With its small fragile corpse still imbedded in the wall she announced to me in laughter that Charlotte was dead. At twenty years old, after intentionally arriving after folks ingested the tortured dead turkey on Thanksgiving, I sobbed when the mother of my ex called me into a room and then declared with an abhorrent snicker, “Here’s a spider! Try to save this one!” and proceeded to smash it before me. Now I’m in my thirties and while my brother-in-law was visiting a couple years ago, he felt compelled to proclaim that he squished a bug in a vegan home on Facebook. What is with people? I always thought I was weak because millions of moments like this are etched into my soul permanently. Like an elephant, I never forget. I have often thought that I am too sensitive to exist on this planet with people who don’t see the beauty of life other than their own (sometimes not even that). I’ve felt shredded by people who are outright cruel in their seemingly personal attacks. These experiences were profound and should have lead me to my greatest purpose. But instead they have tormented me and in turn I have dialed away from my greatest passion to avoid stress, pain, and suffering.

Part of my epiphany is that these actions (from millions of instances), from those I know and do not know, are NOT personal. These actions belong to those individuals and are only a reflection of them, not me. I am not weak unless I choose to take these moments personal. My purpose to bring light to the beauty of all life. I’ve always felt connected to every living creature from microscopic and gigantic, yes even to people who can be unbearably cruel. It’s time I surrender to who I am, make a commitment, and work toward feeling complete. It is too painful to live any other way.

Like so many, I’m a huge fan of Oprah. I recently watched her Master Class and she expressed this beautiful thought that is in perfect alignment with where I am today…

“When you’ve worked as hard and done as much and strived and tried and given and plead and bargained and hoped… surrender.
When you have done all that you can do and there’s nothing left for you to do… give it up.
Give it up to something that is greater than yourself… then let it become part of the flow.”

I unknowingly surrendered and it’s feeling rad.

Did you know that a Humane Educator is a real thing? Ah-maze-ing!

What is your purpose?

The Voices in My Head

I’m sitting at a table in a grassy area amongst other creative folks. The grass makes my feet itch through my open toed shoes but, it’s no bother. The sun is bright and warm but the air is crisp like a cool raspberry tea on a summer afternoon. My artwork is presented on lightweight easels for people to view and buy. My business cards lay nearby ready to be scooped up. The presence of others and their artwork is inspiring and the helps me to build fresh ideas of my own. Then a quiet voice declares, “You’re not good enough to do this. I mean, what are you thinking? This is just a another one of those daydreams.” The voice sounds familiar. Perhaps even my voice but, not as others hear it.

I’ve always been my worst enemy that unconsciously listens to the voice that sabotages all of the great dreams in my life. However, my 30’s have brought wisdom to help me understand that these quiet voices, that seek to make me feel inferior, are not unique to me. Even Oprah hears these crushing whispers. Whoa. Though it’s one of those “of course” hit yourself upside the head moments, it still boggles my mind. Recently, I discovered a fabulous designer and teacher named Debbie Millman. She created a fabulous podcast, Design Matters (there’s that pun again), where she interviews extremely successful artists/designers AND it’s not full of ego or arrogance like you’d assume. In fact every episode that I have listened to, thus far, the designer/artist speaks about their feelings of inadequacy. I remember one designer hesitantly admitting that they had done several great things but, who’s to say it could be done again tomorrow. I stumbled upon a different podcast which featured Debbie as the interviewee. She was asked how she built such a successful career for herself and her honest answer, “therapy.” She went on to credit her therapist for everything good in her life. Whoa.

I’ve spent my days dreaming up my new tomorrow attempting to pay no heed to the hisses that chase me. They can make me feel outnumbered if I listen too closely! Author Steven Pressfield calls it Resistance in his recent book The War of Art, which I am currently reading. The trick is to hear the whispers but instead of embracing them as the truth allowing them to pass by like high speed train. It’s genius and if I can manage it my dreams will likely flourish. I’m the one who stands in my way.

Having severe RA onset and getting fired at once has intensified the voices that make me feel subordinate, especially when I’m having a bad day- with pain and/or fatigue. I think issues of allowing inferiority to win was even evident in my doc’s office last week when I didn’t speak up. I should have said, what the hell are you on doc? Being quiet and fearful doesn’t suit me and in fact, those qualities are not even me. I just have to let them pass by. Fortunately I have many therapists, they’re made up of family, friends, and authors and they to help me to learn to hush the fears with their wisdom an support. One day at a time.

Fibromyalgia? Really?

It’s that time of year again. The leaves are turning yellow and crisp, berries and greens taste better, and I have to reintroduce closed toe shoes into my life. I have only worn them once and I am reminded that we’re not friends, whatsoever.

But if you ask my rheumatologist my RA is under control and I’m doing well! I have no swelling and I am swell! It’s like a dream! It’s dreamlike all right, as in it’s not reality. I scheduled an appointment to see him to tell him the last couple months have been awful and I’m having more bad days than good. I was nervous about my appointment, as I often am, because I have no idea what will be next. Enbrel was a hunch but, there are other drugs too and ultimately it’s my insurance who calls the shots. I love puns. There was also a thought that he would want me to be on Humira a full year to see its full effects. Methotrexate would remain my companion, of course.

I had to have an earlier appointment than originally scheduled because doc had a meeting come up. My appointment moved from 10am to 7:45am. Yuck. To my surprise, when I arrived there were five other patients there already. I was looking forward to his office being completely empty. Silly me for thinking that was a possibility. Though the office was bustling, the appointment was quick and I think I was there for about 30 minutes… total! It has to be a world record. I should really contact Guinness.

One of the reasons I always thought doc was amazing is because he seemed to be able to feel swelling in my fingers that was not visible or physically detectable. Four pills of methotrexate- he still felt swelling. Six- the same. Eight- it improved. Add Humira- I’m doing fantastic! I am healed! The odd thing for me is I rarely have swelling and it’s hard for me to see and it’s my friggin’ body. Upon my severe onset, I had NO swelling (though my fingers locked up and were agonizing enough to not be able to wash/dress) and even my blood results only showed only a couple points over normal inflammation levels. He told me, back then, my nearly normal inflammation levels and nearly normal RA Factor could be an indication that I didn’t have RA. I have never been to an appointment with him when I detected any swelling but doc is the pro, right? A magic man.

He came in plopped down in front of his tablet asked me what was going on. I told him it didn’t seem the Humira was helping anymore. I didn’t feel it kick in or ware off. I had new symptoms, like ribcage pain and it made it difficult to wear a bra. “Only your ribcage hurts?” he asked. “No, all of my normal joints plus my ribs.” He didn’t say anything. He felt my hands, as he always does and said my hands felt great and that they medications were clearly doing their job. “But, I have never had swelling,” I whimpered. “It’s time to start thinking you could have something on top of RA,” he said while staring at his tablet with conviction and continued, “Ribcage pain is not typical for RA and could be pain related to something else. You don’t have any swelling which indicates your RA treatments are working. I’d like you to try a treatment for Fibromyalgia either Lyrica or Gabapentin. If it helps, then we know it’s Fibromyalgia and if not, we’ll have to keep investigating,” he said with ease and continued, “I’m going to send off a prescription for Gabapentin now and I want you to start taking it tonight.”

I saw him for less than 10 minutes, he didn’t gather much information (other than ribcage pain), and I was out the door to be a test dummy with a new medication. I was infuriated upon exiting and burst into tears. I’ve read about fibromyalgia and from what I have read diagnosis isn’t as simple as take this and if it helps you have it. What about tender points? What about talking to me to see what symptoms I have? How the hell does he actually know it’s not RA? And that the medications are working? Do my fingers have a way of communicating with doc that I cannot see/hear? I call bullshit. I’ve never had real swelling!!!!!

I am seeking a second opinion because after reading all morning, all night, and all morning again fibromyalgia seems to be over diagnosed. If I have it, fine. If not, I’m not interested in being over medicated to make docs job easier. I’m interested in having a doctor who listens and doesn’t gage my RA purely on swelling- all of a sudden (P.S. My hands were slightly swollen last night, of course). He used to ask me how I felt because that was the most important indicator. What happened to that?

Has anyone else experienced this? I’d love your input!

Now onto the hunt for another rheumatologist…

The “F” Word

He works full time and this work often doesn’t end upon his arrival at home, as more duties await. Dinner must be prepared, for everyone, and then the heap of dishes that inevitably follow. Then there is miscellaneous other things that pile up like household cleaning, yard work, and critter poop. He’s tired, of course.

Fairness has always been an obscure concept. As an only child, I fit into the stereotype of having all I could ever need, want and more but, it didn’t come without responsibilities. My family did a great job of talking to me as an intelligent being rather than just a child, and taught me how to care for not only myself but others too. At a young age I fostered kittens who were only a couple weeks old. I got up every two hours for feeding and cleaning. I raised my babies until they were old enough to go to new homes where they would be loved and live the rest of their lives. Oh, I cried. A lot. But, it was the right thing to do as our household was bursting at the seams with other critters we had rescued. 

I grew up in the middle of the mountains and didn’t have many comparisons. I was timid with light brown/blonde hair, green eyes, and tan skin. I was very much a white girl. Most of my friends were Native American, living in poverty, and still very much feeling the effects of their ancestors losing their land and way of life. It will never fade. They hated me at first and I struggled to comprehend it. I didn’t personally raid and take away their land and lives. In fact, my ancestors didn’t even participate in it. Quickly I adapted and began to understand that their feelings were justified and grew distain for my skin color and white people problems. I’m still annoyed with white people problems.

There are so many issues above that could be deemed as unfair. But, what is fairness and why is this something that we all must seek? The concept of fairness and American culture’s obsession with it is destructive. It’s evident absolutely everywhere. It has become more visible in marriage issues I’ve perceived lately.

On RA and chronic illness related blogs, Facebook comments, and forums relationship issues are a hot topic. Spouses don’t believe, support, and even abandon their families due to chronic disease. But this is not just in the chronic illness community, it’s an epidemic in our culture in all relationships. It’s my belief that most of it has to do with fairness. Foolish things like who cooked dinner the most, who vacuumed last, and who always has to pick up the kids become the only things in focus. Love and partnership is a blur. It doesn’t stop there, it’s materialistic too. An old friend of mine used to complain how her husband got a new car and how unfair it was that she had to drive an older car. Seriously? Many marriages are comparable to relationships of siblings. When romantic love isn’t important, why not just marry your brother or sister? But, she got a new pair of shoes so I’m going to get a new pair too! Gross.

Years ago I stood in my mom’s driveway with my Uncle and received the most amazing advice, “Marriage is never 50/50. It’s never equal. Often one person does 100%. If you start to focus on things being fairly applied, you’ve lost.” Though it resonated with me even at the time, I’ve gotten lost many times. When I first got sick I felt I was an overwhelming burden. My husband picked me up from the bed, into the shower, washed and dressed me. “What kind of life is this for him?” I often thought. I would even daydream about what his life could be without my weight. Several times I told him he was free, and told him to… RUN! I felt it wasn’t fair and he didn’t sign up for a disease infested crippled woman. Each time he was utterly insulted insisting that it is his honor to care for me. Overwhelmingly he’s just happy I am alive.

He works full time and doesn’t stop when he gets home. He carries 100% without complaint or grudge. He doesn’t tally the number of days he’s had to do the dishes and care for the animals to use against me on my better days. He knows it’s likely I will not be able to ever carry 100% again. And it’s okay because fairness is equal to loss. Fairness is equal to loss in every relationship.

I’m still learning. But I know one thing for sure, fairness is the big ugly “F” word. Everything is unfair for everyone, all the time.  So can we all collectively let it go, let it free, tell it to… run! Can we? 

 

Invisible Pain, It’s the Real Deal

I used to enjoy the couple weeks of intense monsoon weather during the summer. Not the booming thunder (one of my puppies is terrified of it), heat, or the stickiness but rather the rainfall and the lightning lighting up the skies. It’s rad! But this summer has been one big monsoon. Each storm forces an intense game of tug of war between my bones and it feels constant. I look completely normal. My joints are rarely swollen, I don’t have any sign of deformities, or even arthritis. It’s amazing that something can make me so miserable and be entirely invisible. Though I have been validated by my doctors and corresponding heavy treatments, I still feel like it is unreal sometimes.

Saturday evening is my weekly date with methotrexate. It’s an important and unromantic date that brings feelings of both relief and dread. I have plowed through the hangovers it brings and have gotten used to the two days following. It’s really not bad like it used to be. I’m amazed at how I have adjusted both mentally and physically.

Though I have adjusted things are far from perfect. My theory is Methotrexate and Humira wear out and therefore my roughest days usually occur near my next dosage. On top of that there have been thunderstorms, of course. In the past I could be found obsessing about why I hurt… overdoing it, weather, stress, poor sleep, and ugh. Honestly, I am exhausted at the thought of why I hurt. Does it matter? It’s not within my control. I cannot make it stop. I cannot use Chi, positive thinking, or wish it away. Even eating heathy and medications can only do so much. Sunday this all became evident, once again.

My husband is often my pain medication through massage. He spent his entire Sunday rubbing my feet, ankles (or as I have dubbed fankles), knees, lower/middle/upper back, shoulders, elbows, and staying far away from my hands and hips. Even a bump sent me into a frenzy. Often, it hurts more when he gently rubs but I still prefer it. It hurts so good? No, not really.

Monday he was back to work and I was worse off. I slept terrible and felt sick and frustrated. I broke my rule of never crying alone and wept uncontrollably for awhile. I’m not so sure it was a rule but rather an impossible task. Amidst my tears I felt confused, it wasn’t because the pain was at its worst. It wasn’t a ten. I still don’t know why I fell into a solo pity party but, have to admit it felt relieving. Shortly after without much consideration I popped a Tramadol and watched Maya Angelou on OWN’s Super Soul Sunday that I recorded. I’ve never read “I Know Why the Caged Bird Sings,” and I found it to be rather absurd. I turned off the boob-tube (before it further boobified me), downloaded the book for under $6, put on a soothing album called Lang: Death Speaks by Bryce Dessner (which I just now realize sounds creepy, dramatic, and gothic but I promise it’s beautiful. One of my fav singers Shara Worden of My Brightest Diamond is the vocalist.), laid still, and began reading on my Kindle app. The pain was still going strong but, I found peace in a dark place. Maybe it wasn’t so dark after all.

I thoughtfully took a Tramadol before bed. I had never taken two pills consecutively and it felt like a big deal. I didn’t really sleep. I had the sensation like I was falling over and over and calmed myself with a reminder the medication said it could cause dizziness right on the bottle. Still sleep was impossible. I kept the Don Miguel Ruiz episode of Super Soul Sunday on my DVR and put it on to soothe me. When it ended, I put it on again. I could hear it though I wasn’t really listening. I stared at the ceiling focusing on its stillness. At around 4am, I was extremely nauseous and vomited shortly after. Vomiting is awful in itself but adding painful joints into the equation makes the experience more dreadful. My ribs were especially frustrated.

Here’s Tramadol for pain relief. It’s safe and non-addictive. Wow, thanks! It’s like a cruel joke. I greatly dislike pain medications and for that reason rarely partake in them. It’s only when the pain is mind numbing and maddening that I give into chemical help. I believe I was given the lowest dose and frequency of Tramadol, at least that’s what Google found. The pain relief it gave me was very minimal and in the end it made me feel worse. Is there anything out there that can give me relief without the grief? I understand with more frequent use the body gets more tolerant as it has with Methotrexate/Humira. My poor body. It shouldn’t have to become tolerant of anything else. Once again, I’ll bring this to the attention of my doctor. Maybe there is something else? For now I’ll manage with my somewhat effective methods: massage, stillness, reading, aromatherapy, and music.

Some days I pretend I am my normal energetic self and galavant around. People say I look great and on some levels I feel great too. I’m a lover of life and those things living. But it’s invisible even to me when I look in the mirror. I get tired of being sick. I get tired of talking about being sick. I feel like a broken record. But, the truth is I am sick. It’s always there. That healthy looking person in the mirror is sick. And it’s okay. It’s okay for it to be real. It’s not shameful. It’s okay to exist as I am. This disease and pain may be invisible but it’s the real deal. I’m a lifelong learner and RA is just another one of my great teachers.

New Braces!

It’s hot! And sticky! While I was initially excited to write this post about my new snazzy/girly wrist braces I’d now rather avoid the topic… because they’re rather squishy in sweat but remain a necessity. But like the brave soul I am I will trudge on and ask you to ignore my previous statements.

Hey guys! I got new wrist braces! This is what they look like…

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They’re even pink on the inside! Rad!

 

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My old wrist braces got their first bath and these beauties are closely bonding with me. My old ones are gargantuan and drew attention like “how did you break your wrists?” “are you okay?” So these new feminine models will hopefully draw less attention. I’ll keep you posted.

All my tests came back and everything is “normal,” which I figured would be the case. It seems pain, especially in the ribs, can make it tough to sleep/breathe. 

Anyway, it’s been a hectic week and I’ve spent an absurd amount of time in front of my computer. I think I’m going to plop (gently) on the couch for some much overdue rest! Perhaps even watch my new favorite show, Scandal, obsessively. I wish ya’ll a great weekend!

New Voice

I sat in profound shock and disgust. I actually felt like Throwing Up or Diarrhea Planet, which are actually both bands I ran across on Spotify the other day. Perhaps it was a moment like this where they chose their band name. If so, I totally get it now and revoke all of the jokes I made at their expense.”I saw Diarrhea Planet in the women’s restroom at a local concert venue recently. While the bathroom experience was explosive for some, I felt good and Heart was amazing!” “Isn’t Throwing Up your favorite?”

I was in the middle of updating the single sheet of paper that explains a person and an entire career, my resume, when I discovered an email I wrote years ago. I had done a search on my computer for a company I worked for years ago and for some reason it pulled up this particular email. I reread again and again. I wrote this? It says it’s from me. Have I been hacked? I could not hear my voice in this email just some angry psycho. Had my voice changed that much? In a nutshell, the email was rejecting a request for a letter of recommendation for a former co-worker and friend. It was ruthless and mean-spirited, at least up to the last couple lines, “Despite my feelings, I wish you the best in your endeavors.” The most bizarre thing is I have absolutely no recollection of this instance. I had even consulted a friend on how to handle the recommendation request and got an “all clear!” for my response. Who was I? What planet was I on? Clearly I had been hacked… by fear. It was clearly a personal issue of mine that I let carry through to this email. I know I wasn’t in a great place and was trying to do a lot of healing from my former life but wow! It makes me want to apologize to anyone I have ever known. “Sorry for being an asshole! I didn’t understand the role of fear in my life, or how to apply forgiveness, triviality, peace, and compassion! I also hadn’t discovered the Four Agreements!”

Ironically, as I sat stagnantly staring at my terribly boring resume I got a text from a wonderful friend thanking me for being a great friend. Okay, Universe I hear you! I caught a glimpse of who I was, at least for that moment, and thankfully I have grown from that. My life is incomparable to then and I am entirely grateful. It’s taken a lot of- I’ll call it-experience to get where I am. Now, I just have to continue on my path of transformation or as the Toltecs called it, the Art of Transformation. I have to continue to ignore the parasite which feeds fear and inadequacy to live a life of freedom. My dream is right now so why waste it on trivial things or moments of weakness in the past? I’ve never liked my voice but, I believe that it has changed and it feels new. I think I like it! Don’t worry I won’t be putting out an album as the new formed band “Asshole.” I’m guessing that name is already taken anyway.