Not So Simple

I wore my soft canvas slip on shoes, my steps not making a sound, as I walked through our local health food store. My shoes with a giant bow atop, to show they are a gift to my often achy feet, are loose fitting allowing for optimal comfort when comfort is impossible. Celery, broccoli, pink lady apples, and kale are on top of the list- juicing is a priority!

This health food store is what you would expect- it’s warm, the lighting shows energy conservation, it smells of vitamins and minerals, and the employees, though helpful, are mostly socially awkward. Over the years we’ve grown to know a lot of the employees and as a result they are awkwardly friendly and talkative. One guy always talks sports with my husband and with others we talk about our delicious vegan meals and recipes. My husband and I always used to always grocery shop after work and therefore were always together. When just one of us showed up to do the shopping there was always questions about the other. “Where’s your husband? Is he okay?” they would all ask. It seems now they are accustomed to seeing my husband alone and are surprised to see me with him. I often wondered if they assumed we were no longer together due to my sudden absence.

I walked over to the raw cashew bin when the woman with longer blonde hair (there is a woman with short blonde hair too) and a warm smile approached me. “Are you okay?” she kind of giggled and continued, “I noticed you were limping.” “Oh, my knees are bothering me today,” I explained not realizing my limp was that noticeable and continued shopping. She smiled, let off an odd audible laugh, and walked away. Ouch. I suddenly became sad, self-conscious, and acutely aware of my limp.

She rang us up at the register a few minutes later and I stood silently as my husband put everything on the counter, bagged, and cashed out.

As we packed up to leave, the woman said, “I hope your knees feel better.”
“Thank you, I have rheumatoid arthritis so it is what it is,” I explained.
“Oh, a …man that also shops here takes magnesium for that and it has worked wonders. You should try it!” she eagerly said.
“Oh really? Okay, thank you,” I said as my husband and I made a rapid exit. I was too tired and frustrated to educate.

Since I have been drinking oodles of magnesium. Only kidding, of course.

If only she knew that I am on crazy immune suppressing medications and that if something as simple as magnesium worked wonders I would already be taking it! If she only knew that I don’t have arthritis… yet. If only she didn’t hear a familiar word to then pass judgement and offer assistance. If only she did not awkwardly laugh at me as I limped through the store.

Though this was all initially hurtful, I know she meant well in all of her thoughts and reactions. My mom recommended that I say that I have an autoimmune disease rather than RA. Like all things my mom says, I think it is a wise suggestion. Perhaps it will bring more awareness/education and result in kinder and more sympathetic actions, reactions, and thoughts.

There is a staggering number of individuals living with various and often multiple autoimmune diseases however, our society in the U.S. are largely clueless. And autoimmune diseases aren’t the only medical concerns which are largely ignored- there is a hefty list. The key is to not pass judgement on someone who appears fine. That person who parked in the handicap parking spot who looks fine is not. That other person on the street with nice name brand clothing on or other device/thing that doesn’t match their supposed “class” has been through the incomprehensible. That person on welfare with an iPhone is not a stereotype for a “broken system.” Things are not always so simple. Things are not always as they seem.

I often walk, sit, and talk with no obvious signs of illness. I smile and laugh. I paint, shop, type, curl my hair, apply makeup, go to the movies, and eat out. But it is still there, all the time, even though it may not be visible.

A Much Needed Reminder

My althea shrubs are free of leaves, trees dormant, the sky gray, chilly wind gusts, and showers fall creating small pools of cold acid water. A soy vanilla candle, a Christmas gift received perhaps last year or the year before, is lit and flickering in my dark home. Ane Brun, a newly discovered singer, is quietly playing on our new tall black speakers. My youngest kitty is sitting with me, on constant alert, snuggled on our gray warm fuzzy blanket. I’m anxiously waiting for the sound of the horn by UPS, and a small box with my husband’s gift. And with a clunk at my door, cat diving for cover, the gift is here! Rad! It’s a good one too! 7 days until the reveal!

My joints are hot and swollen and I have skin sensitivity near my right elbow, left shoulder, and right knee. It’s a strange and painful sensation, like my skin is burnt, raw, or I have no skin. And ohhhh I am tired. I’ll take some vegan cheese with that please. I’m wearing a horsey sweatshirt, my mother bought for me years ago, designed by Laurel Burch. If you don’t know of her she was and still is incredibly inspiring person/artist. She had osteoporosis from birth had suffered over a hundred bone fractures before her early death at 61. Despite the pain she endured, she always painted with bright colors and whimsical animals. This beautiful sweatshirt serves as a reminder to stay strong and positive. Laurel did not paint her sadness and fear as to not focus on it.

I have been a bit of a hermit these days. I find resolve and peace in the quiet of my days spent mostly alone. However, I had a wonderful visit with two of the kindest friends I have ever had yesterday afternoon/evening. One friend was recently fired, after years of abuse, from the same job where my husband and I were also fired, together, at the same time, and on the same day. She’s the 9th person to be terminated this school year, which just began in August. She is an amazing person and teacher. Though it’s awful to be unemployed in this climate, she has been abused in ways you could not imagine and I am so relieved she is free.

It’s easy to get caught up with thinking of the terrible people in this world. As I have said, my prior employer was my first face-to-face encounter with true evil. I have allocated too much thought on such negativity. However, with my friends escaping and time I know my thoughts will scale back and cease.

I generally avoid television news however, the tragedy in Connecticut has consumed me with incredible sorrow. As a teacher, I feel it touched me on a deeper level than other acts of violence. I also have time, for the first time in my adult life to sit and ponder the awfulness of the world. It turns out this is a terrible and unproductive way to spend time. Laurel Burch would have never done that.

I am now making effort to stop focusing on the sad. In my isolated world, I desperately try to avoid contributing to anything insensitive, selfish, and negative in the world. Being around my family and friends remind me of the kindness that exists. Also, there is an awful lot of kindness that I have yet to learn but, I do know it is there.

On this gloomy and stormy day, I have attempted to re-shift my focus onto what is good. The rain is good for the earth, animals, plants, and us. I have a beautiful roof over my head, with healthy and safe animals, and this nifty device to reach out to you. Thank you Laurel, family, and friends for the much needed reminder.

gRADitude!

I enjoy pressure. Pressure of a deadline. Pressure of coming up with a concept. Pressure to always do my best. Pressure to get the perfect gift. While I don’t have a long list of gifts to by, the few that I do buy, I want to be thoughtful and show that I am paying attention and care. I adore actions and words but not even those fulfill my feelings and gratefulness, so for sure materialistic items will not cut it.

I read an article in Oprah Magazine prior to my severe RA onset. Statistics range depending on the source, but the number that has stuck with me is that 75% of marriages who are afflicted with chronic illness end in divorce. I remember telling my husband about the article and discussing that high number.

All of a sudden we were in a small room being informed that we were another couple afflicted by chronic illness. Shortly after, we also sat in our summer wardrobe in the same hallway, in different rooms from one another, hearing each other be terminated from our jobs by the most terrible humans we have ever faced. In a time of sheer turmoil, disbelief, and fear we ran to each other instead of away. My husband has been understanding and taken on the weight of our world with courage and determination. He has accompanied me to each of my appointments, pill popping, and shot. He makes me laugh when I feel it is not possible and remains a positive force proving we will not be a statistic.

Though hard days have happened and are bound to occur I’m incredibly grateful I have a husband and family that I know operates as a supportive unit rather than individuals with separate purposes. We are in this life together and will take on the challenges together. I am very fortunate.

I have found myself in a bind to show my gratitude, for those who are closest, with a Christmas gift. I know perfection is not real and materialistic things definitely cannot express my feelings but, I still have found myself under pressure to somehow make my message clear. It’s a struggle because it’s not possible. I can only hope that love and words provide some insight.

In light of the horrific recent tragedies, in Colorado, New Jersey/New York, Oregon, and as of today Connecticut (along with numerous others) I am reminded of the importance and preciousness of family and life. As President Obama tearfully shared, I too will hold my family closer. 2012 has truly shown me that you never know what’s ahead and the importance for being thankful for each day you have with loved ones and your health. It’s just too bad it often takes bad news to awaken awareness to be able to experience complete gratitude.

I’m going to let go of the pressure as it is something I trained myself to enjoy. I realize what I am actually saying is I enjoy stress. No, no, no more! When I feel the urge I will redirect my attention to being present and being filled with gratitude for all that I have. I am filled with gratitude and it feels rad! I’ll call it gRADitude!

Fatigue funk on the mend!

Fatigue funk, day 6, has finally eased up today. While I still feel tired, it’s better and I am going to celebrate that (like plucking a whisker on my chin)! Rad! I was able to make a big outing to get my blood work done (liver enzymes check) and pick up dog food (30lb. thank you very much!)/treats and Feliway for my troubled cat. While I am going to inform my rheumatologist of my symptoms, I’m going to try to let go wondering why this happened. I spent the last 6 days wondering is this RA or Humira? I’ve come to the conclusion that it doesn’t really matter. I found myself over the course of the week wasting my precious energy worrying about the past, present, and future. Fatigue makes me feel a serious emotional funk where I feel hopeless and helpless- and neither of that is reality.

With the windows down and Regina Spektor bursting out of my car’s speakers, I made my way home from my big solo outing (still proud I got a 30lb. bag of dog food by myself!). I passed by the road, where I drove millions of times during the 4 years I drove to my (pseudo dream but actually abusive) job and took a big sigh of relief. I don’t work there anymore and it feels SO GOOD! I could have danced in the streets sharing the word with everyone! I I was really miserable and not because of my students or teaching as I truly adored both, but because of the horrific atmosphere. My classroom alone could speak volumes to the awfulness I experienced. It was 80-90 degrees in the warm months and 40-50 in the cooler months (it was unannounced byo- fan and heating) and I (along with numerous others) was too afraid to complain! This is a job I asked my husband to bathe, dress, and physically carry me to on my worst days. Though I always did it for my students, it’s still completely absurd I now know.

So many teachers go through a ton of education and training to get low pay, pay for supplies for their students/classrooms, have poor benefits, and often are asked to work miracles and on top of that are threatened/mistreated/abused. I heard the other morning a state proposed doing a type of “bar exam” for teachers- I hope they also plan to pay lawyer’s wages! I put in the most hours and worked the hardest I ever have as a teacher and was constantly insulted by comments like you have great hours and vacations! HA! It’s as bad as RA is just arthritis. Great teachers are amazing and inspiring, truly.

Coming out of my funk, I remind myself of the following things: I survived a terrible life consuming job (with help from the love of my awesome students) with a terrible disease. It feels AWESOME to be gone from that place! I can be present and be sure that I am constantly in an atmosphere that can ignite who I am rather than extinguish it. It’s so easy to become complacent in job that on paper is a dream when in reality it’s aiding your poor health and unrecognized horrible dissatisfaction of life. My husband remains lovingly by my side through it all and has taken on a lot of additional responsibilities without complaint. I have an amazing family. Though life definitely is not easy, I am more present, more aware, and more grateful than I have ever been! Rad!

Amazing outcome possible?

I got a specialty care management patient education handbook for RA from Curascript in the mail yesterday. Wow, that was a mouthful! On the cover is says “Making amazing outcomes possible.” Inside it answers questions like: What is rheumatoid arthritis? Who gets RA? What are RA symptoms? What causes RA? How is RA treated? What medications are used to treat RA? WOW! Thank you for this useful information Curascript?

I sarcastically read the book aloud to my husband while he made Tal Ronnen’s corn chowder recipe for dinner last night (YUMMY!). I read, “How is RA treated? RA is a chronic disease. This means that it lasts the person’s whole life and may not go away.” The answer to the question is, of course, DMARDs, steroids, NSAIDs, and/or analgesics. This was more of a checklist rather than an informative booklet.

This particular section made me realize, sadly, I could check off all of the above in just 8 months since my severe symptoms started. Thanks Curascript! When I was first diagnosed (just by symptoms) by my primary care doctor he prescribed Naproxen until I saw a rheumatologist. He also gave me very low dose of steroids but suggested I take them ONLY if I became desperate. My first appointment with my rheumatologist he told me to take the steroids! I did. The steroids and naproxen didn’t do much other than fulfill my need to do something about my pain. Then it was adios NSAIDs/steroids and hello methotrexate and it’s companion folic acid! High pain day? Pop a Vicodin or Tylenol (but don’t expect much). Now, Humira has been added to the mix.

And boy has the cost increased! Humira bills my insurance for $2,071 and some change, my copay is $100, and the my Humira’s program (c/o Humira) brings it down to $5 for me. But, it comes with frequent phone calls, side effect warnings, patient training, nurse support, brochures, booklets, and refrigerated medication delivery. According to many different articles, specialty pharmacies are growing due to the high demand of specialty medications, like Humira. I wish I was still unaware that specialty pharmacies even existed! It’s frightening and sad. We’re all sick and it’s expensive. My dad shared that he took Humira years ago and his insurance eventually stopped covering it and at that time it was over $4,000. Gee, I wonder why the insurance dropped it… It was working for him but, he wasn’t able to afford it and therefore had to stop taking it. WHAT?!

Why did I (or anyone) get RA? There are no answers. It would be nice if there was more emphasis on a cure rather than treatments (made for multiple diseases for optimal sales) making pharmaceutical companies and speciality pharmacies lots of dough! I hope with the work of RA Warrior and many others we’re able to get some answers and move away from band aids to a cure. Now THAT would make an amazing outcome possible.

Until then, I anxiously wait for my newest band aid to bring relief. The last few days have been rough which makes tears/fears come in waves. I try hard not to fall into a what does my future hold trap. One day at a time!

Curascript’s ears must have been ringing… just got a call! Refill time already?

Hot Lemon

A couple nights ago, I went to sleep in my favorite gray and super soft Bon Iver T-Shirt and woke up drenched. Fevers and hot flashes have been my hottest trend. Though it’s been windy and chilly, I have been a big fan of keeping the windows down while on outings. My joints don’t like it but my body temperature sure does! It sure is nice, when I go through hot bouts, to actually know what’s going on. For years, I thought it was the Ebstein Barr virus (EBV) which frequently reactivates making me feel icky (Quick side note- have you read about the possible correlation of the EBV and RA? Interesting stuff!). As awful as RA is, it’s been nice to have odd things explained! This body sure is a lemon!

Speaking of lemons, I started off my morning with warm lemon water after being inspired by Kris Carr and reading this article. I have to say a half a lemon was a bit much for me but, I will definitely make this part of my morning ritual. It’s really good actually. It may even help me move away from coffee… maybe. Haha.

I’m working on improving my spirits today. Yesterday, I had a couple (healthy) pity parties. I think it’s healthy and normal to mourn the loss of health (and having to take awful things) from time to time. Right? I have gotten much better emotionally, over the months, with handling having a chronic disease. Today, I am Christmas shopping (online of course) to counter my sad spirits! Shopping (even window shopping) can work wonders! I also think it’s necessary to get to Native Foods this weekend for this sandwich!

I’m also planning Christmas morning breakfast- these amazing looking cinnamon rolls! I’ll have a green juice too, of course!

Sending (the more applicable) cool and/or warm wishes to you!

Challenge!

Happy Sunday! I just ate breakfast in bed (tofu scramble, potatoes, and toast) courtesy of my husband. He is my superhero! As I lay enduring my methotrexate hangover (ugh!), something came to mind I wanted to share with ya’ll!

I recently wrote about how being vegan is one of the best decisions I have ever made. I wanted to share a vegan challenge program you might want to kick the week off with. The challenge is from one of my favorite authors, Colleen Patrick-Goudreau. My husband and I LOVE her Joy of Vegan Baking and the Vegan Table. It was in those books where she showed us how to make delicious vegan chocolate-chip cookies and Mac ‘n’ “cheese.” We were completely and immediately sold!

Though some people see changes in blood sugar, cholesterol, and blood pressure immediately, it took 2 full years to see results in my cholesterol. It’s scary how long the bad stuff literally stuck with me! Eww! But, I did it with food rather than chemicals! Rad! I also slowly lost a lot of weight! I also have no doubt it helps my health in other invisible ways (including RA). Of course is keeps my conscious warm too!

Check out the video here!

Cheers!