The Real Zen of RA

6 03 2008

After writing about meditation and the ups and downs of yoga I realized I didn’t finish a thought I had put out there. I’m trying to find and create a better balance in my life now that RA is a reality, lupus is still a question, and pancreatitis is a definitive struggle.

Outside of my attempts to find immediate enlightenment, I’ve talked to Jax about creating a new after-work plan. I get very stressed out with the idea that after the office and dinner I am “supposed to” hang out with Jax or chillax or something at least half the week or more. This is just a rule I feel is out there – this has not been stated by Jax in anyway. What I’m getting at is that I feel that Jax gives me so much that the least I could do is step away from my work each night to relax with him. This is absurd and highly unrealistic and was causing me stress to make happen. So I asked Jax if I could just do that on the weekend and one week night. Otherwise, I’ll just do my thing and get my stuff done after dinner. He totally laughed and thought I was really nutty. He did that “fine with me but you do know i don’t care” thing. He also added, “you do know that you don’t have to ask me things like that ever. You know that about me, right?” Of course I do which proves this has been self-inflicted torture.

The guilt I feel is for the thousands of times that Jax has really helped me in a health crisis, food crisis, mental crisis, work crisis, employee crisis, etc. I’ve tried the approach of refraining from asking for help all together but that destroyed us for that time because Jax has proclaimed that he wants to be helpful. He said it makes him feel wonderful to be able to help. I do help him as often as I can, but it would never add up.

So what I’ve realized again (I forget this and then remind myself of it every few months) that he’s with me as a choice of his own free will. Jax could leave anytime if he wanted to, but he stays because there is so much more to us then RA. I don’t need to give RA a third-person importance in our relationship even though it fights to be a part in a menage-a-trois, but we don’t have to let it stay on our couch uninvited. The worst thing I could do is question Jax about why he’s with me when he could be with someone healthy. That’s not only relationship suicide, but it’s also like buying a deluxe electric toothbrush for RA.

Instead we’ve been doing this fun thing where if I want to compress my leg or knees in a wrap with soothing cream we’ve made it into a sexy little game. On our way down the stairs in the morning we’ve been having joke time on the long journey down one 1/4 step at a time. I’ve also recently tried this new thing after I picked an argument where I simply admitted that I did it because I feel truly horrible. I’ve NEVER allowed myself to say those words before. I would claim it was using it as an excuse. Isn’t that a lot like having a big elephant in the middle of the room and not mentioning that it just sat on your legs?

When I started this blog it was simply to be able to look back and see my progress. Now that I’ve opened it up to the public I see that it’s helping me tremendously to share my mess-ups to help keep me honest about what is the disease vs. what’s my life needing some extra work.

Life is always a work in progress. That’s the true joy of it.




2 responses

12 03 2008

thanks so much for your wonderful words. you are absolutely right. – Sasha

8 03 2008

As with any life altering disease, you have your ups and downs and surely, it’s never, ever 50/50. There are days when I am at my lowest point and I just crawl under the comfort of my bedcovers and know that for that moment, I am safe and resting. The high point days, I realize that I am better off than most people in the fact that I can get out of bed, breath and enjoy what I have right now. I know that at any time, it can be taken away from me. I cherish every day that God gives me and am very thankful for what I have. Teenagers are very resiliant, brilliant and compassionate. They will understand in a way that most adults can’t comprehend. Speak the truth and how you feel, that’s all they ask of you, honesty.

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