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The problem with going to the hospital is that I was just there! I mean seriously, are they keeping a room open just for me now?

Yeah, I'm delaying. I'm trying to enjoy a few more moments outside the hospital. I just want a little more time b4 needles, prodding and more medications. It's been months since someone asked that intrusive question, "When is the last time your bowels moved?" Every dang day they asked me that. I know I was on some serious pain killers that could shut down my bowel, but the question is intrusive. There is no such thing as privacy in the hospital. No quiet. Just sickness. Depressing.

My left leg is very painful. I try to ignore it and do other things. My breathing isn't normal. All I can do is shake my head.

Here we go again. That's what I keep thinking, here we go again! I don't want to.

Tomorrow I see Dr D in his office. I want to see him b4 I go in just in case I'm in for more than a few days.

I worry about losing my pets again.

I'm discouraged.

I'll have my phone with me.

Faith

Dr. D and I discussed the recent firing of my new CNA. I fired her for several reasons and fired the company, too.

My insurance covers a CNA that can take me to the store and to doctor appointments. It turns out this CNA was driving me around w/o a drivers license or insurance. I called the company and they shocked the crap out of me when they said they hire people to drive even when they have only a hardship license. This girl had that when she was hired but let it drop because she couldn't pay for it. Still she took me to the store! When I called the company with my concerns the CNA decided to call me and curse me out!!! Obviously she can't return to my home after that. ...continue reading "Therapy Review: Lowered Expectations and Less Stress"

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TakenMy physical wounds have healed faster than emotional wounds. There's a real fear that time will pass, I'll 'look better', and people will forget that on the inside I'm still struggling.

When all this first happened and for the entire 5 months, friends leaped to my assistance. I had more visitors than I knew what to do with. 🙂 I felt loved. Now that things are going back to my version of normal with Lupus, I fear being left and yet I know the fear is unfounded. My friends love me and I know it, and I know that they were there for me before all this happened. But there's this fear that all the love and attention is going to stop, and I'll fade right into the background and be forgotten. I like the feeling of being loved. It's not entirely new but its new enough that with a taste of it I don't want to let it go. ...continue reading "Don’t Forget Me"

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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"

It was a packed session. We started off talking about what took place in the hospital yesterday. I was given news that should have made me happy but I can't seem to trust it. I'm still 'stage four' Lupus with issues associated with my kidneys and vascular system but the medications are working very well and have stabilized me. I have no new blood clots. I still have a lot of nerve damage but I can walk and that is something they weren't positive would happen. There's still a long way to go with my nerves healing which means I hurt quite a bit, but I am stable and out of the woods.

I told Big E, my Oncologist, that I want to be happy about the news but I'm still shell shocked. I said, it was the hardest thing I've ever had to do. He said, I know, I was there. When he said that I wanted to cry. I was so happy he said it. He was there, every single solitary day for three months he showed up by my bedside. Week days and weekends Big E was in my room checking on me, three months straight! ...continue reading "Therapy Review: Stability. Forgiveness. 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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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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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"

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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