Lupus is a chronic, auto-immune disease in which the body's immune system forms antibodies that attack healthy tissues and organs. If left untreated, lupus can be serious and even life threatening. Here I share how I am using my artwork and learning music to navigate me towards a simple goal of daily peace~

Bright Bird

Bright Bird
scroll way down to view my Hawaiian photos and don't forget to feed the fish!

Friday, May 28, 2010

The thing about pain....

Lupus is an auto-immune chronic illness that pretty much once you have it then you got it. I am told that once your immune system flips then it can't flip back. Actually I am not buying into that thinking, but let me mention the 'pain' word here. With SLE lupus there is a lot of pain. And it does things to your head such as triggering depression. You know the 1-10 scale the docs use to ask you how much pain you have today? Well lupus is in the 6 to 10 range on a normal day. If you are in your first flare attack you are thinking like the 28 range.... but nurses don't want to hear that. Then you are whining. It is amazing how the mind works when it is managing a great deal of pain. And different people types react uniquely differently to it. How do they treat this pain? Basically with a meds cocktail. I take a drug called Plaquenil that is common for treating auto immune disorders. Then I take the anti-inflamitory Mobic to keep my joints happy and then I take Tylenol. Like lots of Tylenol. You can only take Tylenol with the Plaquenil as they work together. That is it. Everything else I am allergic to. uhhh, oh.
Now after years of Tylenol abuse the nurses said to "watch it on the Tylenol". I have learned it is real bad for the liver. Plan 'B'.
While living in Hawai'i I had two docs out of three tell me to drink in the evening. The other one said to eat oatmeal cookies. No, not get smashed ..which is actually what your mind would like to do, but to have a little glass of wine to cut the pain. The key here is you are trading the Tylenol for the wine or whatever you decide to down. This works for me. But I am by no means telling you to go out and get a shopping cart of booze. If I do not drink at dinner I do find myself taking Tylenol "as needed". I take my other meds in the morning away from the alcohol. The thing is the alcohol is also a depressant. Hmmmmm.... don't need that. The constant pain I am in has that all covered. And it isn't great for my liver either. Balance is the key. Not too much of either and I then think, 'do I really NEED this'? I have become aware that I fell into the habit trap of medicating myself when I maybe could do with out, but was just following routine.
Better plan 'B'.
Try acupuncture My friend Gina Halsey in Lawrence, Kansas treats me for pain and IBS (irritable bowel syndrome) and whatever else she feels I need. I haven't had a session in a while, but one session gets me a long ways down the pike. And I take way less Tylenol because of it.
Try homeopathic remedies My friend Diane Miller in Nahalem, Oregon has been tweeking me for years for my lupus. Then she came across a remedy that claims to flip the immune system back and got it for me. That was a year go. It takes time to reset your system I am told, but this is way better than what the average medical professional has been offering me. She does other remedies for other issues including the IBS. I sleep better and also drink less because of it.
WORK OUT All docs will tell you to get a routine your body can manage. Such as yoga, walking, biking, swimming, weight lifting, Tai ji is excellent. The one thing I miss about living in Hawai'i most is that I could get into the salty ocean. Swimming, boogie boarding, snorkeling, when I am in water there is just no pain. It is marvelous! In fact they are using water as a treatment for the wounded returning from war, such as teaching them to scuba dive. For me here there is no ocean and snorkeling the muddy Kaw in Kansas is just not on my list.

So how is your mind dealing with all the roller coaster ride of constant pain? If you have ever watched a sports class with children and adults participating in the same routine the kids will step out and take a break. When they start to have muscle pain their brains say 'okay enough' and they go sit a bit, then they naturally get back in when it stops hurting. We forgive them that because they are indeed children. Well, unless they really want to just go sit out then the parents get all huffy. The adults will PUSH themselves harder. hmmmm. Look again and you see the different levels of the amount the adults are able or willing to push themselves during the pain level of the sport routine. Everyone has a different level of a pain threshold. Yours is just part of who you are and so learn to find what works for your body.
I have always managed pain well. I actually focus on it and feel it and that seems to dissipate it. If I try to ignore it that doesn't work for me. Unless I am busy. My nature is to be so busy and focused onto something else that I am not aware of the pain. This is the 6-10 pain threshold, not the 28.... And there ya go, that is why taking up the art of oil painting last year is at the moment helping in managing my pain. It is giving me pure pleasure that triggers dopamine into my brain just as exercise does and makes me all happy. Like the best high ever! It is new and exciting because I have to teach myself the medium. I know how to paint and draw, but the oil paint is very different than watercolor medium. So I am totally sucked into it and focused. I am passionate about it. It doesn't mean I do not have pain, but I am able to push through it and doing something that allows me to be productive which then makes me feel good about myself. That is positive and good energy.
If the 'focus on the pain' method intrigues you then try reading Full Catastrophe Living by Jon Kabot-Zinn.


  1. the is great Joie. It must feel good also to write your thoughts down and open yourself so others may benefit. Advice without claiming to have an answer, just good ideas that work for you.

  2. nope, no answers here. Lots of ideas though...