Its a cold and rainy Saturday here in Jersey. The leaves had just started to change colors and and this wind has pulled lots of them down before they had a chance to show off. It’s an easy day to feel down. My joints aren’t too bad today, really not that bad all week. Stiff, but not too painful. Is the Orencia starting to kick in? Or maybe all the effort I’ve been putting into Mindfulness Meditation? Or the Chair Yoga? The kampuchea? Counseling? Writing? Working less hours? Getting more sleep? All of the above?
If you have followed me from the start of this blog, you would know that I started it as an adventure thru alternative therapies for Rheumatoid. (I’m not saying arthritis anymore, it annoys me) Which is kind of ironic because I am a pharmacist. Your drugs are my job security. My sister is a Chiropractor, so I have always been around alternative medical thinking. And the worse you feel, the more open minded you get. I’m willing to try almost anything as long as it is relatively safe. God knows if you read the package insert for most of the biological RA meds, you would be too scared to even consider taking them without a side order of Xanax.
I am attracted to alternative therapies that make sense to me. I’d like to see some reasonably reliable data on the therapy or at least have a good understanding of the theory behind it. I tried acupuncture a few years ago. I thought I did my homework. He was an MD and affiliated with a good hospital, so I felt I was in good hands. I’m not sure what happens during a typical acupuncture appointment but this was a bit out of my comfort zone. The physician brought all the other office personnel into my room to hold hands, make a circle around me and chant. OK, strange but harmless. Then he laid a series of different stones on my back. Somehow they told him what I should eliminate from my diet. When he was thru, I was left with water, beans and grapefruit. Thats it. That’s one tough diet. [Red Flag.] He recommended that I have all the metal fillings removed from my teeth or he could give me injections of a “detoxifier” that he brings back from his visits to China. [Red Flag.] Worst of all he took 5ml of my blood and injected it into my butt. Yes, I said into my butt. What was I thinking? He had medical students with him and he was really talking to them and not me. He just said things like, please roll up your sleeve so I can get a blood sample. OK, roll over. Bam! 5ml of my blood was injected into the side of my butt! He said this would teach my body not to react to itself. WTF? First of all 5ml is way too much to give intramuscularly and OUCH! I never went back. I had a 5ml bruise on my butt for weeks and could barely sit down. I would still give acupuncture another try, but not with that guy!
I finally feel like I found some things that work for me. I work 3 days a week. Thats it. Sometimes its hard to say no when our department is short staffed but I know anymore will set off a flare. I have to get adequate and good quality sleep. I make Kiefer and drink Kampuchea. There is a lot of information linking altered gut flora to inflammatory conditions. Both are pretty good, so its any easy add on to my daily routine.
Now the hard things. I NEVER used to talk about RA. Most people didn’t even know I had it or that it was a problem. Most of my coworkers had no idea until I went part time. RA and I were not on speaking terms. Loosing my Dad brought a downpour of stress into my life. Then my RA caught fire and now we haven’t been able to put it out. I had to find new coping tools for chronic pain, stress and finding a new normal. I had to find a way for RA and I to live together. Counseling helped. I know everyone has to find their own way but I want to share what is working for me right now.
Counseling has been my biggest help. It has helped me sort out what helps me and what holds be back. I learned that its OK to grieve for myself. I don’t have to be strong 24/7. And pain makes everything worse. It just does. Every emotion is magnified and I get totally down.I have to remember that its just the pain. The flare will pass. I just have to hold on and keep doing what I know helps. I have to find a way to live with the pain of a flare and the lesser daily pain and weakness. The worst days are when you are doing everything to take good care of yourself and the RA flares anyway. Then I get just plain mad. And that’s OK too.
In my Mindfulness and Meditation class there is one man who decided to name his pain. He said it makes him feel like the pain is less a part of him and more like something outside of himself. I really liked this idea. I’ve decided to name my pain Vito. No specific reason, it just sounds like someone I could fight with. No more saying that I have pain today. I’ll just say Vito’s back in town. He’s such a pain in my ass.
Speaking of Mindfulness and Meditation, I am really getting a lot out of the class. It’s harder than I thought it would be and weirder than I thought i would be. I can’t explain it, but if you can find a good class on it, I would recommend it. Instead of pushing Vito away and trying to ignore him, mindfulness has me attempting to observe him and let him just be Vito. Accept him and move on. Not an easy thing. I like the meditation part. The more I do it the stranger and somehow more comforting it gets. I’m still trying to figure it out. More to follow.
One last thing. I need to give a shout out to all the people in my life that take such good care of me and wrap me in love every single day. You know who you are.