Paperback writer…

Taking a break from my Nanowrimo writing to blog…

So here is my health update and a wish list and a really general but heartfelt thank-you.

But not in that order.
First and most important is the thank-you. Name mentions would take up a whole page from donations of money, time, and love to the actual back breaking work of moving me (Yup, those ones get named, Thank you Sara, Jennifer, Pat, Regina, Anne, Amie and Bob, packing and moving me yet again is honorable above all honors, the purple heart of friendship is yours.)

Thank you for reading this. When I see you have clicked or commented I feel seen for a moment as a person, not just as a disease, or a role, or an obligation, just a person you are listening to via your eyes, for the few minutes it takes to read this. We are losing that ability to pay attention, so I appreciate it even more and strive very hard to give my attention back in kind, not just to those who see and hear me, but to the ones who don’t as well.

Now a wish list because the first two things out of everyone’s mouth are “How are you,” and “What can I do?”

The socially appropriate part of me wants to answer in my Pollyanna Personna, “Oh I am really great, considering everything!” and follow, “Oh, I got this.”

The somewhat angrier part of me wants to say, “Actually I am in pain most of the time, tired half the time, and pretty much numb, laughing or crying all the time while I reboot to my new normal; but you don’t want to know that, so tell me which do you prefer a smiling recital of gossip worthy juicy details of how my life is falling apart and where I am to blame or a tearful recital of how I am a victim? Which would help you manage how you are feeling about what is happening in my life better so you don’t feel any guilt or need to inconvenience yourself in any way?”

Yup, my angry woman is not real nice, honest in a mean way.

Except pure mean is not really honest either, and the thing is I have made choices that helped and choices that hurt my situation as I will continue to do till I am dead, and the one choice I can make is how I respond.

So I thank everyone for their concern. And here is how I really feel, I am in pain a lot, and a lot more than I have ever been before and since it is in my back and around my heart my activity has been limited, but I am working with a physical therapist and some none traditional methods, including eliminating many foods that increase inflammation still in my diet (like tomatoes and strawberries! Sad Face!) so I can achieve some remaining goals. I look very round when you see me I know! Go inactivity, emotional eating, antidepressants for the stress and steroids! I have an MRI scheduled as well as other things to plan a palliative track for myself. I know that everyone, myself included would love a little calendar of when each stage will happen but all I can tell you is we are all dying, so stop looking for my expiration date, its already passed, LOL, just enjoy the fact I am still here.

What do I need from you, mostly to invite me to do things and offer to drive and pay or if that’s not possible walk the dogs with me and play a board game or two with me. I need all the movement I can get, and the human company however I am not working so recreational spending is out of the question, and often driving itself makes me worse and prevents me from using some of the pain relief I have available. But I am not dead yet, and living is where its at!

If it is hard to fit personal time into your schedule and you have financial wiggle room, Feel Free to Donate here or in other ways. I have had balances paid anonymously at the VA and in rent, I have had people make surprise Costco runs for me, I have also received gift cards for Harkins, Trader Joe’s, Kohls, Hobby Lobby and Target that have fed, clothed and kept me clean. All of this was greatly appreciated. For my storage unit information feel free to coordinate with Jennifer Morrow or Sara Rebennack and rent there is very needed, my guess is at least a couple more months worth.

But what I need most is for you to talk to me, not about me; realize as hard as all this is for you to deal with, I am living it 24/7 and right this moment I just don’t have the ability to comfort you about me, however nothing makes me happier than being of service, so please let me listen to things about your life. And please forgive my shorter temper and way shorter memory, and be patient as I work on moving into the new norm, I know I am pretty self-absorbed right now, I am working on it.

Things I don’t need from you.
Don’t judge me if you see me spend time or money on something you don’t deem important, or if you do keep it to yourself. I dare you to go through my 2014 and do better than I have.
Don’t ask how long or tell me cancer stories. Please.
Don’t tell me how to fix this unless I specifically ask your advice on something I feel you have expertise that I don’t, I have an amazing team, and too much information already in my head, with lots of things I can’t control and too many decisions to make and a long history of PTSD. So when you start telling me how I should do this, or shouldn’t do that, you add to my stress level immensely.

Feel free to laugh with me, a lot. Things are pretty funny still, all the time.

And hey, I am a dandelion, so I could still beat this. 😉

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