Don’t take anything for granted.

November 8, 2011 at 6:34 pm (Chronic Pain, Medical) (, , , )

I can’t type much today. Over the last two weeks, I have been having increasing nerve pain along my shoulders that has reached into my head and caused killer headaches, and also down my arms and made my hands feel like hot pokers have been shoved into my fingers. That’s how I feel today.

I’m still living up to my obligations, teaching and traveling and fulfilling my Purpose. But just when I thought I had some inkling of a handle on what my body was going through, now this Thing That Eats Me wants my hands. The things I need to move energy, to push needles, to write, to hold people, to get my wheelchair around. I’m not going down without a fight, but boy did I take my hands for granted.

Someone did send me an old copy of Dragon, but it wouldn’t install on my machine. I may not be very active here until I get an updated version and figure out how to use it. I usually want people to leave me alone (for the most part), but the pain I’m experiencing is pretty severe (and I have no idea how chronic internet masturbators do the one-handed typing thing for long) and both my focus and my ability to type is at risk.

But I miss this – screw you, Baphomet – and the stats that I checked every day I can’t bear to look at now. So I would love it if you would comment on this entry, telling me something about this blog, or something I’ve done, that has made your life better, or wider, or more whole. Or even just to say hi.

Edited to add: Duh. Turned on comments now.

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24 Comments

  1. Fala said,

    Hi. *waves*

    For the record: my life is tons more colorful with you in it. I’ve been blessed to know your quirkiness, your humor, and to see you rockin’ everything from red lace to green hair. Your blog is a needed dose of truth and reality in the “happy shiny everything will be fine” universe of chronic illness. And on the whole, there are few people I’ve trusted more.

    Thank you for being in my life, Del.

  2. jamie said,

    Danny found your mri today. Call j for details when you are up for it. I love you, and I love your advice, the talks we have, your giggles that make everyone smile, and your stubborness.

  3. Lisa said,

    I’m so sorry to hear you’re going through this. I wish I could offer something in addition to prayers for relief for you.

    You’ve done many things for me, maybe not realizing how much they impacted me. You offered to help mourn my grandmother’s passing several years ago, and that meant a lot to me. You did my first corset piercing which to this day I enjoy thinking about and remembering and sharing with friends. You’ve shown me how to live life with grace, being true to yourself and not allowing others to tell you how or who you should be. That’s courage and strength. From some of our earlier talks together, I’ve learned how to look for what makes me happy, and how to use it to make others happy instead of twisting my life around to please everyone except me.

    JP and I have missed you and often wondered how you were doing. I’ll let him know. And I’ll keep praying that the doctors find the reason for your pain, and a cure for it as well.

  4. Eric S said,

    We have had a unique relationship, haven’t we? We have not always agreed but you have certainly taught me things. Luck in battle my friend. Sometimes it is darkest before the dawn. Hail Del!

  5. Rebecca said,

    I could be here all day listing the ways you’ve made my life better. Like the fact that I made my first movie partly because you got involved and so it wasn’t just my crazy pipe dream anymore. Or having the absolute worst date of my life and being able to talk to you about it and therefore being able to understand what happened. Or playing Apples to Apples with you at my first Beltane when I had been having a crappy time and on my turn you put down the blank card and I picked it as the winner because even though we hadn’t exchanged a word, we both knew what that card meant and it cracked us up. All the endless rambling conversations, all the old-hen gossiping, all the times laughing till it hurt, all the wacky stunts…I cherish it all.

    I love you and I miss you. I wish that had the power to take the pain away but at least it’s here for you to see whenever you need to be reminded.

    And I still have those goofy Queen/Diva best friend heart pendants we bought on a whim at some mall at whatever event we were both at.

  6. Rill said,

    Your FSA Beltane Ritual, complete with pinatas rocked my socks. I will always remember it and be inspired in how I “do magic(k)”.

  7. Hel said,

    I’d be happy to come over and see if I can make Dragon install, if that would be helpful, if you think it might be made to work with more time invested. Lemme know.

    • dying for a diagnosis said,

      Ninja is going to take a whack at it, but we think the prob is that the copy I have is for 32this bit machines and I have a 64 bit machine.

      • Hel said,

        That seems odd, 64 bit windows usually has no problems installing 32 bit software. Well, hope it works out, and the offer stands if it seems to want more time than Ninja’s got to spare.

  8. DaveC said,

    I’ve really appreciated the chance to stay in touch with you, even in a limited way, through this blog. It is fascinating to see you pick up problems that others might be scared to even approach, turn them over in your mind’s hands, and find the cracks that you can pour water into, awaiting the freeze to come.

    Be well.

  9. Wintersong said,

    If I tried to write everything you do for me, I wouldn’t get anything else done today, so how about for now I leave it with the most recent: you kept me on the saner side during the GKE clusterfuck.

  10. Jenn said,

    While I am not at all pleased with the illness that has prompted you to start this blog, I am truly grateful that you have started it. I almost didn’t realize how much I missed reading your words until I had them back again. I am glad you’ve chosen to share this journey. It takes a lot of courage. Thank you for being brave.

  11. Debbie said,

    You are in my thoughts.

    You challenge me, always, to look at things from another perspective, to think and pick things apart, and find the meat of the thing (whatever that “thing” may be).

    I am honored to know you.

  12. ruth said,

    i love you. today i hate my God. being able to see you this past weekend and spend some time with you has made my world bearable. you are now and always will be my sexy rockstar boyfriend… until you get sick of me that is 🙂
    thank you for being part of my universe… thank you for the pain involved in what you go through to do your work. it is noted, it is appreciated, it is important… and it is not going to be easy. 😦 if i could carry this for you, i would live to be a hundred carrying it if i had to so that you could have even a few years of respite.

    and damn Him, you are still being watched… and you still taste good.

  13. Rave said,

    If I wrote all the thing you have done for me it would be a novel. You have touched my life in so many great ways, given me direction, focus, change, and inspired me with your Work. I am honored to be a part of your life, and your blogs have given me more of an insight as to what you go through on a daily basis

  14. Kenaz Filan said,

    Ouch! Don’t have much to offer in the way of constructive suggestions but hope you manage to get an armistice signed soon in this latest battle of the continuing War of Del’s Body.

  15. Jalkr said,

    Right now, I’m remembering the drumming and singing you did for us at DO during the hook pull. You’re awesome, Del.

  16. Michele said,

    Thank you Del for doing this blog. I make an attempt to follow it via G+.

    You are awesome.

  17. Penelope Schmon said,

    You probably aren’t even aware of some of the things you have done for me. One time in particular, when C was away, I lay on the floor of the shower wishing that the water would just wash me away down the drain because I didn’t think I could last one more day alone. Suddenly, there you were, in my head, telling me to quit whining and get the *bleep* up.

    I’ve always had the greatest respect for you. I wish I had a magic wand that I could wave and make all your pain go away. You are a great person and I’m very happy to know you.

  18. Jessica said,

    Del, hi. You made me feel pretty. I would have liked to have had the opportunity to get to know you better.

  19. Spark said,

    Del,

    You’ve made an impact on my life that is way out of proportion to the actual amount of time we’ve spent together. I try not to bother you too much since I know you like to not be pestered, but I think about you frequently (not in a creepy way I promise); I wish I lived a little closer so that I could offer you more. You’ve made significant changes in how I think about many different things and the way I view myself. Of course, you’ve introduced me to the wider kink scene which is something I really value, but more than that, I value your insights and your calm presence. Your ability to keep cool and deliver measured instructions in the midst of adversity and personal discomfort is something I really admire. You radiate a thoughtful sort of dominance that makes it very satisfying for me to offer service to you, and makes me replay events over and over again looking for how I can do better. I know we don’t have the same sort of spiritual landscape, but I trust you completely in those matters, and you are the only person I could feel comfortable talking to about spirituality. All this, and I could probably actually count the number of times I’ve been privileged to physically hang out with you. You have an impact disproportionate to your physical presence.

  20. Leo Mason said,

    I think you were one of the first people that illustrated how play is not so much the action itself, but the interaction between people, and where you move their mind, body, and soul.

  21. AmyAmy said,

    Belated, as you’ve already posted again twice, but here I am, letting you know I am here and I loff you, and still miss and think about you.

  22. Asrik said,

    Just getting to this now. You’re one of the coolest people I’ve ever met. You’ve taught me things about my own sexuality, my gender idenity, the way I think about the world, what spirituality means to me, and so much more. I miss hanging out with you and I look forward to future times spent in your company.

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