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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"

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Fifteen days total but halfway through I began to lose myself to the constant and extreme pain. My medication cocktail sometimes caused me to see dragons and aliens. I'd been in intensive care for the bilateral pulmonary embolism and life threatening blood clots. I was about to begin a chapter of life I'll never forget, one that has left physical scars and emotional pain. What I've decided to do is express some of those experiences through art.

The first experience in multi media is called Three Birds.

Half way through ICU care I was losing it. The doctors worried I'd have to go on dialysis. My kidneys were shutting down, my heart was in trouble too. I was in trouble and I knew it so I asked my God, "Are you with me?" I needed to know if He knew his servant needed his comfort and approval. ...continue reading "Three Birds"

My toes were so cold I wanted to get under the blanket, better yet I could warm imaginary toes beside and imaginary heater and get better results.

I experienced, for the first time, this phantom pain they talked about. It's where you can feel the limb that was removed. One man said he could feel his foot itch even though it wasn't there. For me, I had a strong response like neuropathy. It was as if I were experiencing Raynaud's Syndrome. The 'toes' were so cold! ...continue reading "Raynaud’s Syndrome or something else?"

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I've gotten a hold of all the paperwork I need to apply for the wheelchair accessible apartment! I have everything I need! Oh I can't wait to have my own place again. Since this started I've had zero personal space either physically or environmentally. People touch and prod, observe and examine, when and where they like. And they've done it since February when the train wreck began. So now after 5 months of living in a hospital with 2 months of that 5 in a nursing home, I will have night time privacy.

Coming w me to the new place (when I get one) will be the staff: nurses, CNA's and the physical therapist. I'll have a CNA 3x a week for four hours. It seems like a lot but there's still a lot I'm unable to do for myself. ...continue reading "Apartment Possibilities and the Wheelchair"

Snapshot fma
Snapshot

The last few days have been torture. I hurt from the top of my head to the soles of my feet. The amputation site is having an electric storm of shock and neuropathy. It's been a bad few days and I've done very little reaching out. I've just been waiting for medication time!

The foot that was amputated coincidentally was the foot with Chronic Reflex Sympathetic Dystrophy. Though amputated for other reasons, I hoped the RSD fire and pain would stop, it didn't and won't. It doesn't work that way. ...continue reading "Enduring the Days"

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