If I could collect a dollar for every time I heard the statement, “Yeah, my back hurts too” I’d have enough money to fund the entire HHS and CDC!
Ok, that made me laugh. But the point is that this is what we, as people with Ankylosing Spondylitis, hear. If you think about it that is a really intolerant, insensitive, and completely unkind thing to say to someone whose spine is slowly fusing together.
Imagine… not being able to touch your toes. You aren’t out of shape or lazy or don’t do enough yoga – come on! Imagine… you can’t go skiing anymore because a fall could not only hurt you, like it would anyone, but it could kill you. Imagine… owning multiple heating pads – there is a reason they are blue – blue for spondylitis! More on this with a wonderful guest apple I’ll be posting on Sunday. We aren’t dying, our disease is not terminal. We are just living a very difficult existence. Please be more tolerant and kind if you hear someone is dealing with AS or chronic pain.
I don’t want to rant but I’m passionate about trying to help people understand that there is a difference between my lovely husband waking up and saying he’s sore or his back hurts, and the pain I deal with. And – I’m doing so much better – I’m one of the lucky ones who can get access to the crazy expensive drugs that give me the strength and ability to have a basically normal life. Imagine… being one of my friends like Shashwata Satya from Bangladesh who is a brilliant young scholar who has had multiple surgeries and had a taste of life with Remicade but now can’t afford to continue to get it. He said “I could fly when I was on Remicade” and now he’s firmly attached to the ground and he’s suffering. Imagine… being my friend Ron who is charming and giving and a wonderful new friend I’ve met through ASAP who is in so much pain and he can’t get anything from the Canadian health care system (something I hear repeatedly) and that he’s distraught. Imagine… my dear friends – a life with AS.
Some days I have a hankering for simple things. A glass of iced tea, a good book (the kind made with paper), and taking a moment to sit in the sun out on the front porch and throw the ball for the dog.
Pattern for me is calming because it’s based on rules and guidelines. I always seem to go back to my lovely patterns even one as simple as a grid and circles. My new site design will have these elements – I think they will suit The Feeding Edge well. I can’t wait for you to see it!
Don’t worry it’s nothing radical – just lines an circles…. like yesterday and today but a bit different. You’ll see.
I had such a glorious but crazy busy day. I’ll tell you all about it soon but it involves a guest post on the WEGO health blog about the first ever Twitter chat with Big Pharma! A huge step in the right direction!
Day 139 was created in pen & ink and watercolor – my favorite!
By focusing on the details we can lose site of the big picture. Lately my life just seems to be easier when lived in the minutia. Taking one day and one apple at a time may get me to 365 days but if I think of all of the apples I have left to do – I’d be lost in the forest. Sometimes it’s just fine to only look at what is right in front of you.
Day 138 was created in ink, prismacolor pencil, and watercolor.
It amazes me to see something come to life from a seed or a dormant bunch of twigs. For me it’s a way to paint with living things and I’ve always been very interested in trying my hand at topiary. Country Living had an article last year or maybe two years ago that showed how to create a simple rooster. So, I bought a couple boxwoods thinking I’d just follow the directions and viola! Yeah, right – they looked horrible and I found out that boxwoods don’t like my super dry climate or the 6200 ft. elevation. Some day I need to live where things actually want to grow! And my next attempt will be an apple 🙂
I had my Remicade infusion today so my thoughts aren’t forming well. I think I just need to call it a night for today since the medication packs a big punch and makes me so tired for a day or two.
*** Welcome to all the new folks and keep posted for tomorrow – I’ve got three new guest apples to post!!!! ***
Brief is life but love is long. – Alfred Lord Tennyson
My niece is researching the genealogy on my husband’s side and it made me think of my grandmother, Ruth. When she passed away I was just finishing up college. There were a few of her belongings that I really wanted: a big prism that she kept in her south facing window, her wedding ring, and an old style lunch box that she decoupaged herself. It is actually very lovely.
The lunch box sat on top of her highboy chest in the dining room in a place of importance and honor. She used it to store bits of information, important letters, newspaper clippings and even a hand full of program schedules from The Boston Symphony Orchestra with her notes inside. She was not a fan of Schoenberg’s ‘Erwartung’ I would guess from the “Poor” notation but Schubert’s Symphony in C received “The Best” according to Nana.
After years of going through these tidbits of her life – they have become important to me and there is a piece of paper that dates back to the early 1800’s. It is a record of some of the Abbot children and when they passed away. I’ve included an image of this in todays piece. I feel love and connection to these people who lived two hundred years ago as well as great sadness about their short lives. Love apparently is long even when lives are not.
Not the good kind of webs – not the kind that interconnect and tell a story, but the kind that fog up your thinking. It happens to me when I stretch out my infusion dates (an attempt to save money) and go from my usual and effective 5 weeks to 6 or even 7 weeks.
I find it interesting that it isn’t only my body that is affected by waiting for the Remicade but it is my ability to think straight, concentrate, and feel creative. Of those three things, the most important for me to draw on right now is the ability to be creative and I’m struggling. It drives me crazy really, but it is part of my once upon a time. My story is a web of so many disparate pieces that have come together to bring my art and my passion and my need to share Ankylosing Spondylitis with you. So even when I don’t feel like I can think straight or create anything – as long as I focus on my mission, my passion, I can have faith that I’ll come up with something to share with you and have my… once upon a time.
Why does such a fan-tabulous color have to mean sad. I don’t so much care that the color and meaning are linked to Greek mythology and Zeus creating rain storms when he was melancholy or that a ship that lost its captain during a voyage flew a blue flag. I like the German’s approach best that blue means someone who’s drunk.
Isn’t language grand!
How do we ever figure one another out? I’m thinking you are sad and a German is thinking you spent too much time in the “biergarten.” Colors should not be associated with emotions because you then end up with “seeing red” and anger vs. Valentine’s Day and love. Red definitely has an identity crisis! I know – it’s sheer silliness, but latching onto a color can also create brilliance in branding. I’m green with envy over any emotion, product, or cause that has managed to have a corner on the market of a color!
Day 132 was created in the new blue – one for Spondylitis!