His article explains in clear terms what happens in the body when Autoimmune Disease is triggered. I was stunned by the comments – I had to weigh in myself because people turned his article into a three ring circus of ways to “cure” us and all of the things we’ve done to bring these diseases on ourselves. These comments we feel deeply. Very deeply. Like arrows in our hearts.
It’s time for us to fight back – shoot those arrows back at them. One comment here and there won’t have an effect but if we bundle our shots together, we can change this perception.
The comments could wound me if I let them. I choose to not let them anymore.
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.
One of my new Twitter buds has a slogan he uses and attributes to his Rheumatologist – “Motion is Lotion!” Keep active and those joints will stay happy. The tin man was stuck in one spot for years but let’s get moving, ‘Stand Tall’, and Move those joints as much as we can.
If people with AS could carry around a magic oil can for when those creaky joints act up – wouldn’t that be amazing? Unfortunately, for many the cure seems just out of reach. I speak with people everyday who can’t access the medications that would provide them with relief. We need to find the “heart” in our country and figure out how to make some changes – people shouldn’t have to live in pain when there are medications that can help.
Blogs and bloggers are often accused of being narcissistic.
I understand where this comes from, I do. Bloggers spend a lot of time talking about themselves but they do it to attempt to reach their reader – to hopefully give you something of value so that you’ll come back 🙂
I promise to try to keep my ramblings and rants to a minimum for the next 255 days but I also promise to show you the cut open side of Ankylosing Spondylitis. This is the place we have trouble exposing to the air because we’re afraid you might view us as less than we truly are – and see the withering at the edges.
Day 110 was created with watercolor only. Usually I draw a light outline in pencil but today I decided to wing it!
***New Guest Artist*** Please check out the Guest Apples page – Grace McKee is featured today – you’ll love her unique art!
Aaaaaahhhhhhh! I received my Remicade infusion this afternoon.
The vitality this amazing drug gives me is slowly working its way into and around my cells, blocking all those crummy little immune attackers that are friends to most people’s bodies. In mine, they go haywire and have a big party. Without the big pac-man, TNF blockers, I have an immune response that is slowly trying to fuse my spine together (among many other lovely things.) Before I started taking the Remicade – over 4 years ago now – I couldn’t function from the pain. I was on high doses of anti-inflammatories, nerve/seizure meds, and heavy duty pain killers including the Fentanyl patch, and a chemotherapy drug called methotrexate. In February I will celebrate a three year anniversary of going cold turkey off all pain killers (well – I don’t count Advil) and I now only need my infusions, but…
Want to know what keeps me up at night? – – – thoughts of the Remicade stopping to work or losing the ability to be able to get it for insurance or financial reasons. I put six little vials on todays image – they are $700 each and that doesn’t include administering the drug or various other costs associated with this medication. It’s terrifying to even talk about it – but I will because people need to know what this thing called AS does to not only our bodies but our lives. And, I’ll keep talking about it because such an amazing medication needs to be available to more people who are suffering and have no access to a medication that will give them their lives back. I’m fighting for them – in perhaps an unconventional way – but they – YOU – are what keeps me going even when it’s easier to just stop.
I had no idea what to call this apple so… what do you think? LoL!
Remicade infusion tomorrow! I’ve managed to make it to seven weeks! I really wasn’t sure I could do it but it will definitely help the savings account :0 I’m so looking forward to getting my “rat juice” – that’s what I call it because it’s made with some type of mouse protein and it makes my infusion nurses scream and my fellow Remicade pals laugh. My Dad has a pig valve and I get rat juice; we are quite the pair! Better living through chemistry – well, and science and a great heart surgeon for Dad!
Day 94 was made with ….. elmer’s glue (the web) and a mixture of watercolor and liquid acrylics.
I am so excited to tell you about Henri & the Bee!
A story by a 5th grader by the name of Katherine and her dad Jeff, about a a dog named Henri who dreams of travels across the country and through the seasons in search of a sweet treat. Helped by a friendly bee, Henri savors life’s moments. This charming story is illustrated with lovely, vivid designs and is available as a book or calendar and the proceeds will be donated to various non-profit organizations. One of the featured charities is the Spondylitis Association of America! Please take a look – it’s a great way to support the SAA. I’m thrilled to have been able to introduce Jeff Lea, the CEO of Rev Pay Solutions, to the folks at the SAA and he was kind enough to include Art Apple A Day on their blogroll as well!
I painted my front door purple last year – actually the color was called tannin and it is more of an eggplant or wine color. I have a wreath on it for most of the year that has chartreuse apples – I love the color combination of greens and purples. I thought I’d paint something similar to it today.
Day 73 was painted with watercolor and liquid acrylic.
Was it the Coke ad or the big white abominable snowman from Rudolf the Red Nose Reindeer that made us think arctic beasts were related to the holidays? Maybe it’s the fact that they live near the north pole so they must know Santa Claus.
It doesn’t really matter – it’s great for the Polar Bear! For anyone looking for a unique gift for the person who has everything – you can adopt a Polar Bear! Also – here is a really cute video of a Polar Bear playing with a red ball.
Day 65 was created with acrylic inks and watercolor.
Christmas lights! Love ’em – hate ’em – can’t live without them!
We always put up a live tree. Maybe someday I’ll give in to the convenience of an artificial one but it won’t be because of the sap that gets all over the house as you drag in the tree, or the needles that shed continually for a month and eventually clog your vacuum or even the fact that you’ve got to somehow manage to keep it watered. Oh no…. it will be so that Doug and I don’t argue about the lights!
We’ve settled into many patterns in our lives – it happens once you’ve been with someone long enough. I do most of the food shopping and cooking, he cleans the cat boxes. He makes the coffee in the morning and I feed the animals. Fair trades mostly although Doug does things for me without any complaint because he’s lived with me and the beast of my chronic pain and if he doesn’t understand, he certainly knows how AS has affected me. It doesn’t necessarily always make it easy and the Christmas lights are a great example of just that. I want them put on the tree in a certain way – I’m very opinionated about these things and he knows that it is a job that really stresses my body. So, bless his heart, he puts up with my direction of “no, closer together” or “you missed that branch.” Yup, he puts up with it but he does it for me and it usually consists of a bit of bickering back and forth because no matter how particular you are in putting those lights away the year before, they always snake and twist and tangle. Pretty much like anything that is worthwhile – it takes some working through to enjoy and appreciate!