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.
Doug, Ella, and I drove downtown for the Arthritis Walk – photos will be on my Facebook wall tomorrow. Ella was treated like a queen with a pretty blue bandanna to show that dogs get arthritis too as well as treats and love. We managed to do the two mile walk around Washington Park but I have to admit that my joints were not too happy towards the end and I did decide not to go for the extra lap to make it the three miles. Oh well – there is always next year.
Kelby is a Peachey Planner. She is beautiful young woman who has an amazing story. I consider myself very lucky to call her my friend and I’m proud to be walking with her and her “Peachey’s Pack” for the Arthritis Foundation’s Denver walk on May 14th.
Kelby and I met on twitter and realized we were both in the Denver area and planned a time to meet. There is something fascinating about meeting someone for the first time (in person) who you share so much with. We hugged like long lost buddies and never considered for a minute the age difference – we were kindred spirits in our shared struggles. I am so very, very proud of her and this apple is for her. This is how I see Kelby – bright, vibrant, and loving. Happy late Birthday sweet Kelby!
Today was a great day for Ankylosing Spondylitis Awareness. Our project Hope & Apples is being featured in a collaboration with the Australian Physiotherapy Association seminar and webinar happening world wide on World AS Day May 7th!
One story and one apple at a time we will raise awareness of spondylitis. I wonder where the journey will take us – I’m just so thrilled that so many people are joining me and speaking up.
Funny things happen when you talk about what you are passionate about. I went looking for a web development company in Parker today. I was driving around and I couldn’t find it so I stopped in at a design company and asked them if they knew the people I was looking for. Although they did not we started talking and I told them about my apple a day AS awareness campaign and Hope & Apples and the gentleman I was speaking with started asking me questions about AS. Turns out he has dealt with severe back pain for over 10 years and was diagnosed with Fibromyalgia but had never heard of AS or seen a Rheumatologist. Then he told me about a great web guy he and the local NBC news affiliate use and I mentioned the Arthritis Walk on May 15th and he said this web guy was very involved with it because of his wife.
Let’s speak up – we can find people to help if we just start speaking up – one story and one apple at a time …
Day 207 was created in watercolor. Doug says this sweet little image is not my best work – thank goodness for someone so close to me to keep my feet on the ground and push me for better tomorrow, but… I kinda like it 🙂 and doesn’t infusion day allow me to slack a little tiny bit?
It’s been awhile since I’ve been able to design a few holiday apples.
When I started Art Apple A Day it was October so I did about a week of Halloween apples; a haunted house with an apple trick or treater, a candy corn, a skeleton with the apple core as the center, and “‘one bat apple spoils the bunch” was my favorite!
Thanksgiving and Christmas quickly followed which were almost as much fun but then the holidays become further apart and St. Patrick’s Day and Valentines Day didn’t really seem to allow for more than one apple for recognition on that day.
I’ve been thinking for days about easter bunnies and easter eggs and peeps and baskets of goodies. I haven’t decided on what I’ll create for tomorrow but I love Mr. Easter Bunny Apple! Whenever I create something my peanut gallery (that would be Doug) usually has some commentary and it is often related to how people will know my latest creation is an apple if it isn’t green or red or shaped perfectly. These conversations usually end in me doing what I want and Doug wondering how an apple can possibly be a white Easter Bunny. We laugh together now because the conversation and debate always end with me saying well – I see the apple and I’m the artist so…
How did an artsy free spirit end up with an analytical logical numbers guy? Good thing I think he’s cute 🙂