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My Face My Art - Half FullMonday was one of the hardest days I've had in a while. It started off with nightmares that stayed with me for much of the day. I tried to go back to bed to start over but had yet another nightmare. Then as planned, I got myself together, got on my horse (wheelchair) and left the house despite mega pain. I went to the shoe store and cried my eyes out in the store unexpectedly. I had no idea the grief would hit me right there in DSW but it did and there I sat crying in my chair in front of people. I felt like a fool.

Later I went to the post office to send out art only to discover that it was Columbus Day, no mail. That would have been fine except I was already at my max of stress and physical pain. Then later the big worry happened, I fell. ...continue reading "Surviving to Eke out Gratitude"

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September 1st I started a gratitude art journal. I wrote down a few things I'm grateful for then decorate the page. After reading through daily entries I see the thing that pleases me most is getting basic needs met like those today. My CNA showed up! I got a shower and a hot meal and slept in a clean bed.

Today the CNA that arrived made a wonderful chicken curry dish. Tomorrow she will help do some more organizing here. This is a photo of how things are coming a long so far. I love my new art table to bits but I've still not used it. I'm not going to push it though. It'll come.

studio in progress

...continue reading "Gratitude and Gratitude Misses"

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I feel a quiet desperation inside.

I've had nightmare for the past few nights and have had a hard time waking up during the day. I'm exhausted.

I don't feel worthy of much. I sometimes hate myself enough to want to slice my arms to shreds. I have not and will not, but I recognize the symptom for what it is.

Sometimes I think the only reasonable thing to do is give up. Giving up doesn't mean dying.

I'm still creatively constipated! I've got a beautiful new art table that I have yet to use. I'm still working in my art journal. What's wrong with me that I can't paint? I'm depressed, maybe even lonely. ...continue reading "Desperation and Depression"

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Dr. D and I talked about the CNA that showed up today who was absolutely perfect. It went so well I had to call the supervisor to tell her so. That's when I found out I don't get to keep her but for one more visit. I hate that. The CNA and I also did some much needed organizing of the walk in closet. I so needed that help. You know what she did that felt so good? When it came time for me to soak my foot, she got a wash cloth then got real close to my foot and asked if I wanted her to wash the amputation site. She didn't act disgusted at all. I needed that. I really, really needed that. I didn't let her do it, but the gesture was healing. ...continue reading "Therapy Review: CNA. Butchery. DID."

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The first CNA they sent me didn't work out. I'm not sure what the company was thinking. Here's the text sent to a friend who is still in the nursing home dealing with CNA's, nurses and roommates from hell.

"Oh Lord! My new CNA is 70 years old. I was like, what? Who sends a 70 year old woman to help a person in a wheelchair? It's her job so I'm not holding back. I have her act as my legs. I like her but I have a feeling she'll quit by winter. She says the laundry room from my apartment is too far to walk and the trash cans are so far they might as well be in a different zip code. lol My thought? Stop being a CNA BEFORE the age of 70 or don't complain about the distance you've got to walk. 70! They can't be serious. Thank goodness I know CPR. I may have to do it on her aged self after she gets back from the trash.

Update: They're sending me a younger CNA Monday morning, 8 am. We'll see how that goes. lol. The 70 yr old CNA and I talked frankly about her inability to handle my case. Crazy to send her to me."

You know what I always worry about? How will she feel about seeing my little nub, the amputation site? Will she be grossed out? Is it ugly to her? Am I ugly to her? The thought now is, it's not ugly, it just is what it is, but it's not ugly. I'm not ugly because I've had an amputation. Slowly, I've gone from ashamed of the amputation to 'just' being a bit self conscious. Lets hope that a CNA is used to seeing such things because I have such things. Then again, I'd hate to whip it out - Bamb! - then have her pass out on my floor. ...continue reading "CNA and Self Confidence"

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Do you know what it means when hair grows on your legs? It's not just an inconvenience for Westernized women, it's a sign of health. For years my legs had no hair because of the edema and other issues. Now, with less edema, with better circulation and healthier blood I actually have hair growing on my legs. Now, I'm not rivaling Sasquatch or anything but its enough that I'll remove it, finally. I had to look at it for a bit and be sure that it really was going to keep growing. I'll spare you the photographs, just take my word for it, it's growing.

I'm healthier inside and that's something to be grateful for today. Hairy legs, what it means, I'm grateful for that. I'm grateful for my little measure of health.

Faith

I can't seem to get my head together. I'm physically and emotionally frayed. I've been trying my best all day to gather myself and settle my insides. I'm worried about my foot because it's split in a T shape in one spot then open in two other spots. The surgery was May 7th but with Lupus, healing has been compromised. We're back to treating the areas with honey.

I see the surgeon in October. I hope it's healed by then. In my head I fear disappointing him if it's not healed. Will he ask me why. What did I do to it? Did I neglect it? Why didn't I follow instructions? I did. I have followed instructions to the letter, even putting that horrid cocoa butter on myself despite hating the scent. I finished his painting, no problems there. I knew I'd knock it out because there was so much emotion involved. I could see the painting in my head. Perhaps the painting will ease other disappointments that my foot has yet to heal.  ...continue reading "Disquieted Soul"

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I stay seconds from tears. I can laugh and engage but it feels like tears are just behind my eyes waiting to escape. Today I listened to a set of symposiums on courage and just balled my eyes out. I do not feel courageous, I feel broken. I feel like I've got a lot to be happy about but lately tears have remained in my eyes.

I'm tired. I cleaned my little apartment today then went to the grocery story. That took a lot out of me. My foot is screaming! What's new? The pain all over my body is unbearable. It makes me want to do anything at all to make it stop. ...continue reading "Lupus and Heroin"

Tonight was services. I knew I wanted to go but I felt so ... less than. I looked at my hair, stroked it back and thought, this mop looks horrible. I can't go like this. I guess I could put it in a pony tail. I dragged my hands over my skirt and blouse and thought, this will have to do. Then I looked at my feet embarrassed and considered staying home. I have to get shoes to go with skirts but they have to be 1.5 foot friendly. These Converse with a skirt and the whole make up thing looks so stupid, but I really needed to be there with my spiritual family so I went on. I'm happy I did. Mop hair, decent clothing and tennis shoes didn't stop the friends from talking to me and hugging and smiling at me. I shook hands and got to talk to so many people. I'm happy I went.

Part of me doesn't want to go places because I feel like such a burden on people. ...continue reading "Get Going"

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I am, first and foremost, grateful for life itself! I'm grateful for each breath, even when it's labored, even when it hurts. I'm grateful to be alive. I'm about to be 47 years old at the end of this month. I can say I've earned each gray hair on my head which is why I refuse to ever color them.

I love my friends. I am very happy for my friend who became a great-grandmother for the first time. It's amazing to see her progeny, her beautiful family blossom and bloom over the years. How amazing it must be to know these lives all lead back to her. She has been enduring, strong and graceful during her recovery and deserves the happiness that comes with new births, dances, graduations and all those picture moments in time. I'm so happy for her right now.

I am pleased to finally get a look at my gifted 55 gallon terrarium. I knew it was being given to me and was the property of a young man who died. What I didn't know was that he painted the wood stand and top fire engine RED. Yes, bright red!!! Ha ha ha ha haaaaa! It's tacky but I shall paint it and make this free gift fit my decor. ...continue reading "Gratitude Expressions 8/26/18"

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