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."
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.
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"
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"
Saturday at 2pm I'll move to the new place. I'm excited but I won't have the internet for a few days. In the few days off line I hope to set up my art table and supplies. I need to see my belongings again. It'll mean a lot to see my stuff. It's hard to explain why I look forward to seeing gadgets and odds and ends, but I do. Part of the things that were thrown away for various reasons, were all of my bound books, including my Shakespeare collection, Maya Angelou book and poetry collections as well as my cookbooks, some of which I had for 20 years.
They say 'things' can be replaced but they forget to add that we will mourn these 'things' for awhile. All my dried flowers, including sunflowers were tossed by the person who cleaned out my apartment while I was down. Every dried rose I have is gone. It hurts. I have every last one of my dolls and every single piece of jewelry, every leaf of tea and every single piece of artwork and art supplies. Those items are sacred. I feel like my poetry collection fell in the category of sacred, but l wasn't there to say so. ...continue reading "The Move"
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"
I got the apartment and move in Saturday! I already have the keys and lease.
I'm excited and a bit nervous, mostly excited. I have to figure out how to fit my stuff in this place. One thing I know is I'll have a 55 gallon aquarium in there! Somehow, some way, that aquarium WILL fit. I'm going to split it in half, half bedroom, half art studio w tea bar. I'll keep the doll collection in the bedroom area. I'm sure my little studio will feel like home in no time. ...continue reading "Saturday is moving day"
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?"
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"
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"