Finding the Spot Of Grace

2 03 2008

Ive received some truly wonderful comments these past few days and I must tell you how deeply grateful I am for them.  They boost my sense of community and that life is about these moments of understanding and healing between each other.  I recently read in a book sent to me by a friend ” At depth everyone is beautiful.  Often it is the discovery of the “spot of grace” that heralds the beginning of our deepest healing” – Kitchen Wisdom by Dr. Rachel Naomi Remen.  She works with patients with cancer and at the end of their lives.  i am NO WHERE near the end of my life, but it was nice to think about how my diseases have helped me find that place of serenity about life and in a way to show me a better balance in my life.

Yesterday I arrived at my current gig and I sat in the parking lot for a few minutes and realized how sick I was (not a flu or anything but exhausted, nauseated, and very weak).  My limp had returned. I sounded horrible when I called Jax to tell him I was turning around to go home.  I asked if he could call my supervisor on the job to notify them that i had to go home and throw up.  Truth is, I drove home in a daze, said hi to my book keeper at my house and went to sleep for two days.  The thing that made me upset about it is that I was SO strong all week and kicking some serious ass.  I even wrote friends that I had the same energy as I used to in 2006.  I guess I still dont understand how it’s such a swing or see-saw.

Last August when I was first getting diagnosed with lupus or RA or both or none I read a blog that said that RA is like a third member of the relationship.  But one great thing to report is that Jax has been awesome/incredible about reaching out in a more sensual way and putting aside the caretaker role.  it’s been fantastic for both of us and i feel that after 5 years we’ve once again hit a new level of understanding each other.   relationships are work.  you cant get lazy about your love, particularly when the disease anguish could so easily be mistaken for anguish over your mate.  For example,i woke up for a few minutes late last night to spend a few minutes with Jax.  He’s been working on a project he wanted to share with me.  I was feeling terrible and accidentally took it out on Jax.  I apologized promptly – but I can much more easily see how it breaks us apart when I let the diseases become a third member of a relationship.  I refuse to allow it entrance to my home – but when I find it got in anyways I feel now that it’s my duty to push it back out the door.

If an illness such as RA is like a third member of the relationship – I don’t want to give it that much power.  I think that would be giving up the work that’s required in any relationship and saying – why bother?    For me personally I refuse.  I wonder what other people do?  I wonder how other people see a chronic disease in their relationship.
-Curious, Sasha

PS – I’ve been on Enbrel one month.  Working good so far!  Been off prednisone for 2 months and no weight loss yet beyond 2 pounds.  Still at 173.  I’m thinking that I must  begin an exercise regime as eating less along does not seem to work.

Also, we’ve moved couples therapy to every other week since it’s the other side of LA and hard to mentally go every week.  We hardly have time to tackle the solutions from the previous week before we are back again.  I think this was a good move for us.




3 responses

7 03 2008

I love your comment because I cycle through being where you are currently at. I wish i could say Ive been there – done that – but the reality is that it’ll creep up at some point when i least expect it because that’s the nature of life. But it does serve to reaffirm why we stay together – so that is a positive that comes out of the confusion. – Sasha

6 03 2008

oops, i spelled my website wrong, i fixed it so you can link to it now with my name…..duh LOL

6 03 2008

Hi Sasha,
First I’d like to say I thoroughly enjoy your blog. I have a few autoimmune diseases going on and tested positive for RA for the first time a couple of months ago, doc says it MAY be RA, we’ll see… anyways, about your post. I see chronic disease in my relationship as a smotherer for both of us. He is always worried about me, can he help, can he get me anything, is there anything he can do to make me feel better? For me, it’s the guilt. He is doing so much for me. I wish I could do something for him but im too damn week! He deserves to be with someone who can live life to the fullest with him, etc. It smothers us and I would like to figure out a way to not give it so much power. Can you tell I’m kinda new at this? 2 years sick and still trying to figure out my ‘new’ life.
OK, I’ve rambled enough on your blog 🙂
be well and keep on writing!!

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