Amy Ropple - Make Art!
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April 17, 2020

4/17/2020

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Friday during April Vacation. Which is irrelevant because it is no different than any other day. I am still posting work for kids to do, and giving them feedback on what they do, and am still thinking like an art teacher...so many ideas for when we go back to school! Collecting lots of new ideas and trying to think of what an online art program would / could look like. So many possibilities and could be very interesting. Never as good as the real thing, though. 

Had a thought today, though, about my general state and this post might not make sense to people who do not have a chronic pain condition. It might seem like more whining, and that attention could be better paid elsewhere by DOING something. Problem is, the only parts of the body that aren't really hurting right now are my hands, despite my efforts to coax them into movement by feeding the dogs, cats, birds, and piggie. And making coffee, taking pills, eating a raw carrot (I really like one in the morning, not sure why?!)  Time spent waiting. Waiting for the pain to go down just enough so that when I move it is not a brutal exercise of triumph.

I'm doing all that I am supposed to be doing. Getting adequate rest. Eating healthy. Moving as much as possible every day. Taking the meds like clockwork. So why do I suddenly develop concrete and barbed wire limbs today, and not yesterday? And not tomorrow? Makes no sense, and that is a hard part of dealing with RA. It has a mind of its own and rears its head at the most unpredictable times. While I am glad my hands are good, my dogs are looking at my with anticipation of a walk in the sunshine. I would love that, and would love to be able to take a long, leisurely walk right now. Then I move a leg, and body says no, at least not right now. 

I thought listing the steps of dealing with a flare like this might be of interest to others who deal with this...comfort to know there are others who do this stuff!

1. Open eyes and take assessment of pain levels. Know it is bad, but force self to get up and think "It will wear off." Subtext: "Riiiight."
2. Gulp down daily meds, and look longingly at an extra prednisone pill or seven, knowing it will make it all go away. Also knowing it will grow hair on your female face, increase the hump of fat on your back, eat your bones and blow up your moon face even bigger, not to mention internal organ damage. Vow to stay the course and take only the regular dose. 
3. Stagger to sink and fill big mug with water to make coffee. Realize parrot is watching and making the sounds of each step seconds before the actual sound happens. Laugh. Start thinking of ways of walking only on one leg. Realizing that you've tried it and it is hard to do. Besides - which leg is the good leg? Can't tell anymore. 
4. Gently change dog water bowls and hop over to get a can of doggie food for the girls. Spin the filled dishes like frisbees to dogs with hopes they reach their goal and do not spill their contents. Stagger over to the cat area and make sure the felines have what they need. They have zero tolerance for slackers. 
5. Sit for a minute and distract self with Facebook and email while waiting for medication to make it easier to move. The gnawing thought that this is one of those days when the meds will be ineffective. Try to deny this thought. Realize I am holding my breath and remind myself to breathe. 
6. Begin feeding the birds. Often this requires ice packs placed in specific places, and a few minutes of waiting for the numbing effects to happen. Feeding the birdies involves many steps including careful but awkward bending to retrieve soiled newspaper, changing ceramic bird baths (weights, anyone?) and cleaning dishes, all while dodging an angry green missile called Cairo who is never happy with anything, and shouts a violent "No!" just before tossing something to the floor. If lucky, he finds something to amuse him for about two minutes at a time. If not, he rides my head and shoulder, shouting no at everything. After cages are refreshed and food is inside, gratefully gimp around and put the birds back in their houses. Turn on Channel 2 and watch them watch. Laugh. 
7. Hobble over to cabinet and take an extra tylenol. This is war, baby. Sorry, liver of mine. I've got to walk better than this to function today. Feels a bit futile, but it is all I have in the arsenal that won't send me back to bed. 
8. Apologize to dogs who think they should have already have been walked. And know that they should have. 
9. Return to coffee and carrot, and distract self again for a half an hour, waiting for relief. Instead, feel overcome with exhaustion as though I have been up for 24 hours straight. Huh? Where did this come from? Why is it here? We are talking hard-to-hold-head-up tired. Suddenly. Know I have to keep moving or I will sleep sitting up. Leave coffee and carrot. 
10. Walk slowly through house, picking up the puppy detritus -- shredded wee wee pads, shredded paper, shredded toilet paper (see a pattern, here?) Another pattern: step, breathe, step, breathe repeat. It is hard to breathe normally when making a movement that hurts so much. Over and over. See puppies look so happy when walking near the door, then seeing them slink sadly to the big doggie bed and collapse with a sigh when they realize it isn't happening yet. Trying, girls, trying. 
11. Force another cup of coffee down, standing this time. Contemplate getting dressed and out with the dogs, hoping the fresh air and light can battle the overwhelming fatigue. Knowing it is going to be hard today. If I listened to my body, I'd go back to bed and wake up in 2021. Look at clock and realize next set of pain meds can not be taken for several hours. Want to cry. Want to give up. Want to go back to bed. Want all of this to just stop and want to have a day - just one day - when I can spring out of bed and be productive like I used to be. Then put all those thoughts in the denial box, because it just ain't going to happen. 
12. Sit in chair and write this blog post, taking time to move legs and arms and neck gently to get ready for the inevitable required bodily movement. Knowing that when I run out of ideas to write about, I have to move the painful cinder blocks that have taken the place of my feet. Accept it, accept it, accept it, and get going, hoping not to grimace when outside like I can do freely indoors, alone. 

Coffee, tylenol, and stretches do not address a flarey morning like this. I am not sure what does. The rhyme and reason of RA is mystifying. The end! 

Teddie, Tessa, and Ellie need their walk now, and darn it, they are going to get it.  Cheers! 

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April 11, 2020

4/11/2020

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Notes from the pandemic, Volume 7. At least I have thought about posting this one. It has taken this long to get a new rhythm, and new normal, and I almost feel guilty for being...happy. I am home, I am ok, I have my wonderful pets with me and time to care for them. I have my new baby dogs to nurture. I have opportunities to help people by making masks, and can connect with my students online (granted, not enough of them!) And, I have my art. 

Watching what is happening outside of my little happy bubble is horrifying. The deaths, the suffering, the isolation of those in hospitals and nursing homes that can not be supported by loved ones is heartbreaking. The response by nurses and health workers is amazing, and the videos of ones who are overwhelmed by what they see really gets through to the soul. So much suffering. have made over 200 masks so far and will keep going as long as there is need. 

Therein lies the guilt. Being immunosuppressed, I have been warned. I would not be surprised though if I have already had the virus, as I was really run down and had symptoms in January and February. If that were true, I would not need to be quarantined now. Hoping for a simple antibody blood test, which the government is working on. 




​So, after nearly a month of this, I've realized...
1. My puppies are true angels
2. I miss my students and school life so much! 
3. BUT...my pain levels have not changed, but my level of suffering has gone down. I can address pain when it comes vs. pushing through the bads all the time. 
4. I need a lot of sleep to function and not be exhausted all of the time
5. Facebook, texts, and the Internet is a lifeline
6. Being a pack rat has its advantages
7. My house is still a mess, and I can't blame not having the time. And it is ok because no one is over here but me!
8. The photo I posted on this page a while ago is very telling -- exhausted, grumpy, old haggy. Will be replaced. 
9. Spring will be here, regardless of the pandemic.
10. I will always have more art in my head and heart than I have time and energy to create. The extra time is invaluable...stay tuned! 

Be safe, everyone.



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    Amy Ropple is an artist and art educator who believes engaging in visual art can make life happier and more meaningful.  This blog is a daily journal of creative habits and interests, as well as reflections on living with chronic autoimmune disease. Website: http://amyropple.com

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