If you have ever read me before you probably know that my blog is 2 fold. I talk a lot about food, but I also talk the relationship between that food and my auto-immune disorder. I am trying to balance my life so that I feel as good as I can and one of the ways I do that is through eating a vegan diet. But that’s not the only way.
Today’s post is more about the RA side of things then the food. Because going vegan has helped me deal with RA, but I still take medication. I’d love to think that someday I won’t have a need for those meds but for now they are a part of how I deal and balance. And they may always be.
Taking care of the pain is part of the balance of living with RA. There are different ways to do that but it is integral to functioning appropriately because without some control of the pain I couldn’t function. But having read Kelly at RA Warrior’s recent post I am lead to believe that many people have difficulty with this. That not all rheumatologists are willing to discuss pain and prescribe medication or talk about ways to handle it. The conversations that arose from a Twitter chat about RA lead Kelly to create a blog carnival all about pain.
It’s not that I don’t think about pain. I think about it every day. But until Kelly put out the request for posts I hadn’t put much thought into writing about pain. But I have been writing a lot about balance lately and this fits in nicely.
I seem to have a very high pain tolerance, as friends remark regularly. Apparently I do things like shake out my hands and /or move body parts to adjust them without really thinking about it. Often when friends say “So? You’re hurting?” my first reaction is to say “No.” Sometimes I think that I’m so used to being in pain I don’t always notice it. I know I often don’t notice it until it’s almost too late.
My rheumatologist and I have discussed this. She has told me I don’t have to be in pain. She encourages me to take my pain meds regularly and not wait until I’m feeling bad. (At this point 2 alleve twice a day plus the other meds.) Together we have tried to reduce my prednisone. The first time we tried it didn’t work at all and she told me to stop. Now we’ve managed to get it down by 1 mg a day. Not much, but something. Her reasoning, among other things, was that if I flare badly when I go back to school I will have some leeway as I can easily go back up. How sad it is for me to think that other rheumos don’t talk to their patients like this.
We talk about food too. She says I’m the only patient she can remember who has lost weight while on daily prednisone. When I told her I feel better since going vegan she was thrilled.
At my appointments we discuss stress and ways to reduce it. She asks me about how much I’m sleeping and what I do to relax. When I told her I was saddened that my hands can’t handle me doing my mosaic artwork much anymore we brainstormed other things I could do to feel creative. It’s a conversation we have. Yes she is the doctor but I am the one living the life. We both have our expertise.
It’s not totally her job to make me better, nor is it totally my job. We are working together and I wish all patients had that relationship with their doctors.
She helps me manage my meds. She monitors my blood levels and says things like “Your white blood cell count is lower than I like” which gives me information to make good life choices. Not all those choices are easy (like the one I made recently to change positions to a job where the stress might be a little less and the exposure to some sicknesses a little less) but I feel like I have someone who trusts my judgement.
I am responsible for being a good patient. This means taking my meds, having my blood drawn when I’m told to, and following up with other specialists. (Like the eye exam that was overdue?? Yes. I did it!) But it also means both telling her the truth about my pain and trying other ways to deal with it beyond the meds.
I tried massage. When I had a major flare in my 20s it did help some. This time it felt great when I was having it done but I hurt for days so I decided against it.
I like guided imagery for pain assistance. My personal favorites are ones by Belleruth Naparstek like this one. (I am in no way connected with her or her company. I have just had some mild success with them.) They don’t take the pain away but they have been known to relax me enough that I can sleep when the pain is vicious.
I firmly believe that cutting out animal products from my diet has helped me with pain and inflammation. Particularly when I have dairy I feel both more sluggish and more swollen. And having improved my diet to the point where I am eating less processed food I have eliminated most of the symptoms of IBS and reflux I had before. Since I feel a little better dealing with the RA is just a little easier.
At my last appointment my doctor asked if I would be willing to try yoga. Her thought was that she wanted me to have multiple ways to deal with the pain. She wanted me to have a variety of strategies to deal with flares so that I could have the most normal life possible. It’s like having a great big toolbox of ways to handle pain. There are the tools I use regularly, plus some that are there if I really need them. It’s another way to balance.
What do you have in your toolbox to handle pain?