Every great inspiration is but an experiment. – Charles Ives
Lately on Saturdays I’ve been creating a “Saturday Apple” – an apple that is pretty but simply painted and that doesn’t include any post. It was a bit of a compromise with Doug because I was spending a lot of time on the weekends on my blog. And, it was a way to get a little break for myself too. Today I sat down around noon and instead of just pulling out the paint I was dying to try a technique I’ve been researching. It is a method to transfer printed images onto a surface. It allows the artist to incorporate images into the piece without using a college technique that can lead to deterioration (ha in about 100 years or so) but…
I have really wanted to try it – but when you experiment you have to be prepared for failure even when it is accompanied with inspiration. I knew it was going to take a lot more time than a Saturday Apple but it was really hot out today and after planting a couple of new $2 Lowe’s special salvias, I was ready to cool off.
I had a lot of fun making today’s apple. I used fabric, gesso, thread, paint, scrap paper, and the image of the apple you see is my Zentangle Apple from Day 151. Is that cheating??? I used my own apple to make another apple. Anyway – I used this transfer technique and then stitched and painted and beaded – oh my!
I’m lovin’ making art. And honestly I cannot wait to create without constraint!
Day 303 was created in a bunch of stuff! See above 🙂
Over the winter I talked a lot about feeling like I didn’t have any ideas for my apples. I probably became a bit of a broken record for a period of about two weeks. And then it cleared and I’ve been fine until today.
Total creative block.
So I asked for help – thank you Facebook for instantly connecting me to so many people. My friend Betsy replied with a photo. A photo of her using a nebulizer. She then asked me if it inspired anything and of course it absolutely did.
Betsy and I chatted for a bit – I was concerned for her and curious. AS can throw us many curve balls and include complications beyond the joint fusion we typically initially talk about. Since we all seem to present with different variations and intensities we tend to talk about the key issue that affects our daily lives and we all have in common – which is pain. We don’t talk too much about the what-if’s of some of the less common complications and one of the reasons I think is because, well – they are scary.
Betsy told me that last week she passed out at home alone and awoke with heart palpitations. She didn’t know how long she had been out but she knew something was wrong and she did what many of us would have done. She got up and drove herself to the hospital telling herself that was the reasonable thing to do since a world renowned hospital was 5 minutes down the road. And after a number of tests and a few days in the hospital she is facing a meeting with a cardiologist – and using a nebulizer in the mean time to help keep her heart rate regulated. I don’t understand really how the heart and lungs all interconnect but what I do know is that this is scary and hits home and makes all of us with AS ask that question. “Will it happen to me?” It isn’t something we can dwell on but it is something I hope everyone is monitoring. Her situation is a reminder to us that AS is a difficult disease to deal with on a daily basis but we also live with the worry of the future in a way that involves a stress about how the disease will manifest. It isn’t like most people who wonder about what disease might or might not strike in old age, for us we know the general course of our disease enough that our minds have a place to wonder to and to imagine.
I asked Betsy if she was freaked out or if she was just numb. That may seem like a shocking question for me to have asked her but for a fellow AS’er – we do become quite numb to the latest symptom and complication. We have no choice but to deal with the stark facts and do the best we can to face our circumstances. I know Betsy would agree that if the time comes to freak out – she’ll do it and then do what she must. She is brave and strong and she will get through it – I have every faith in that fact. Thank you Betsy for reminding me that when I need an idea – you are all around me – you are all the inspiration I need.
Day 302 was created in mixed media. It is two haves of the cross section of a bronchus or lung airway. One side is open and the other constricted. The photo she shared with me of her using the nebulizer inspired a google search that resulted in this medical art image and I then took a lot of artistic liberties.
A lovely woman – a new good friend – asked the question today about how to help with the pain when the meds have run out. That is something I would love to have the answer to because the pain of autoimmune arthritis can be excruciating and when you don’t have the means to get it to break it wears you down body and spirit very, very quickly.
But, I do have a few tips up my sleeve from the years where I promised myself to do anything and everything that might make it a tiny bit better in the hopes that those tiny bits add up to a big enough bit to give even a little relief. I have a “life boat” full of items that help me survive when the pain cannot be handled by simply having the right attitude. My life boat is kept stocked and checked. It consists of emergency pain meds but in this case I’m talking about 11 things you can try when there are no pain meds available. For my readers who do not live with chronic pain – unfortunately with our system of care and the stigma surrounding pain medication many of us have experienced times when we have run out of our prescriptions and there are no refills on the meds we need to take the pain away effectively so we are stuck in a horrible situation. We have to a) somehow get through or b) head to the emergency room. I’ve been there, it isn’t pretty because being in pain apparently doesn’t rank very high on a triage list. So – here are a few coping strategies I learned over the years.
1. A very hot bath preferably with a few cups of Epson Salt.
2. An insense burner. I have the kind made of soapstone where you use a tea light candle under a “well” that holds water that you can place drops of the scent that will help. I use lavender, bergamot, and lemongrass. I know, some of this stuff is going to sound all new-agey but trust me it helps. The brain has to pay attention to the scent – and if part of the brain is thinking/processing that scent then it has less to process pain.
3. A Neck brace. Yup – like the ones you see people wear after they are in a car accident and get whiplash. When my neck feels especially horrible and fragile the brace gives it some wonderful support. I’ve had to wear it at some pretty embarrassing times, like the morning after my brothers wedding. I had just started on Remicade and I was a mess but I got through the night. I’m still very glad that I’ve never seen the video footage of being on the dance floor because I’m quite sure I was doing a cross between the white man overbite and the penguin waddle. But I was there.
4. SI Belt – Ask your PT or Physio about one of these. I love mine and I use it to garden and do anything physical. It is an adjustable belt that you wear low on the hips (about the height of your SI joint) and it goes under your clothes so no one needs to know but it is again something that helps me get some extra support.
5. On the lines of items that you can own but I’ve gotten from my PT/Physio – I have tape that is similar to the stuff you see some athletes wear on areas that are weak – remember Kerri Walsh, the Olympic volleyball Gold Medalist wore that strange piece of tape on her shoulder – same idea. Usually my PT/Physio will tape up my back but if I need to – my husband can do it in a pinch. I love having my back taped although I don’t do it too often, when I do it helps my back so much!
6. Music! I find that the spa type music is perfect for me but it is the same concept of occupying you mind. Whatever works for you.
7. A Supply of various heat producing patches that you can pick up at the drugstore. These do help – remember, we’re looking for tiny bits that help make a bigger impact.
8. Eye Mask – Many of us with AS have eye issues that create severe sensitivity to light. Even when I’m not flaring I find that sleeping with an eye mask helps give my eyes a break and helps prevent the pain of a headache behind the eyes. I love the Tempur-pedic mask but they are $29. I bought my first mask in Las Vegas. I was there for a trade show back before my diagnosis and I was so sick. I could barely open my eyes. I would later find out I was experiencing the first in a series of undiagnosed iritis flares. If you’ve had one – you know how horrible and dangerous they can be. When I wore that mask out probably 5 years later – Doug found a perfectly decent one at Wal-Mart for about $5! My only issue with this is that I can now no longer sleep without it. Look for the big pillow type of mask or treat yourself to the Tempur-Pedic one!
9. Touch. Not Sex – that is the last thing I want when I’m in pain but I love having my hair brushed. It is another sensory distraction that works. Maybe for you its a back scratch or simply having someone hold your hand.
10. Understanding of friends and family. A little empathy goes a long way.
11. Laughter – put on a funny movie or your favorite sitcom. A list of some great ones is below.
What are some of the little things that help you? Please add a comment with your suggestions.
4. AS Blogger Spotlight – Jennifer from Live Art.fully writes a beautiful blog. She talks about art, her family, and living with chronic illness. I love Jennifer’s writing and I love hearing her anecdotes about her two sweet and bright little girls.
Learn from yesterday, live for today, hope for tomorrow. – Albert Einstein
I have learned so much in the last 10 months.
I had no idea what an amazing ride this was going to be. I had no idea that I would experience so many joys as well as some deep sadnesses that would travel along with me. I’ve felt so much joy in seeing the determination and strength of others and I’ve made some wonderful friendships that I cherish and will always carry with me. But, I also didn’t expect how much I would be affected by the fact that there are so many wonderful people suffering. I know what spondylitis can do to a life – I just didn’t realize that by actively being in the community I would be faced with living the suffering through the stories I would hear every day and that these stories would stop being something that I could keep at arms length or turn off – these stories were now my friends. I live their pain with my pain now and the toll it has taken on my emotions has been immense. It has been overwhelming at times but I am truly grateful for it. I am so blessed to know and love and feel the support of so many people. I thank each and every one of you for helping me get this far!
Even with the ups and downs of the last 10 months, I wouldn’t change – much. I can’t say I wouldn’t change anything – there are many things I would but I have learned so much about myself, I’ve learned about twitter and social media which has been an education that I will always have, and I have learned a lot about human nature and what chronic pain and illness can do to a person.
I have lived the lives of so many and re-lived some moments in my life that I would have rather left behind. I pledge to live for today because today my AS is managed. I will live for today in the hope that I can help make a bit of difference. I live for today because tomorrow I make another apple – in the hopes that tomorrow we will have a cure!
Day 300 was something very new – something I’ve been wanting to experiment with – my sewing machine! Paper, acrylic paint, ink, fabric, thread, a leaf made from a yen of some sort that my Dad brought back from China.
Thank you to everyone for letting me have a moment. Sometimes in life I think we just need to let it all out – oy – I guess I did! I had my infusion today so the pain has already subsided some.
Remicade can really wipe me out for a few days while the magic TNF blockers grab hold of the inflammatory cytokines and render them ineffective. It’s like my body just wants to put energy to making sure the protein gets spread around and finds all the places it can go to work.
Exhausting work 🙂
I’m Alright makes me think of the Kenny Logins song – so here you go – take a moment to go back a few years, think for a moment about Bill Murray and Caddyshack and remind yourself, like I have needed to do today. We are all – alright!
I’ve been sitting here trying to come to grips with what I’m feeling.
I’m tired – but that isn’t a feeling.
I’m tired – of making apples.
As much as I love what I’m doing – and I do love it… I’m tired of so much of all of this.
Is it ok that I just admitted that? I’ve been criticized for being too optimistic, too positive, for sugar coating things and for not talking enough about AS. Well – guess what I have to say to that… I DON’T CARE. I’m doing this for me as much as I’m doing it for what I believe in. If that causes some to question my motives well, I can do nothing about that.
I’m happy, I’m optimistic and I have AS – it is possible. Oh, and so you know – my head is pounding, my neck brace is on because my neck is killing me, and I feel like I could sleep for a year right now. Does that make everyone happy – I just bitched about my AS.
I will make every gosh darned apple no matter how much my neck hurts, no matter how tired I am, and no matter how much I’m criticized. I set out to do this – for so many reasons – one of which was to prove I could accomplish something regardless of this stupid disease. Yes, that I could do it. It is a personal journey, a very solitary journey at times, and I’m tired of being misunderstood. My heart is aching and split in two. I just wanted to do something good for myself and a few others along the way.
Now, my pity party is over. This is the only time you will ever see it – that is MY way. It should be respected as much as someone else’s way.
Day 298 is a collage made with watercolor, graphite, and a few scraps from my old dictionary.
”Let’s begin by taking a smallish nap or two.”
-Winnie the Pooh
Poor Pooh has been lost in the Harry Potter buzz. I adore Winnie The Pooh. Ok, so who doesn’t?
There is a new Disney animated film about the Hundred Acre Woods with the whole cast of characters – Pooh, Piglet, Rabbit, Owl, Kanga & Roo, Eeyore, and TIGGER! I cannot wait to see it and get lost for a couple of hours in my childhood.
I also loved the book The Tao of Pooh – I think it would be a great time to re-read it. The book uses Pooh’s natural optimism and outlook to teach Taoism which is a way of appreciating and learning from whatever happens in everyday life. Get stuck in the door to your home, no problem, sit back and enjoy the time with a friend as you wait patiently to lose a few pounds. No need to panic, it will all sort out in time. Live in the present for heaven’s sake!
I didn’t sleep but a wink last night and my weary AS body needed a smallish nap or two today – and since Pooh begins most tasks in life with naps – how bad can they be?
Day 295 was created in Black India Ink and Watercolor.