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!