I asked you to do the surgery. You said you could or a colleague but I trusted my life in your hands. It felt like there was so much at stake, more to lose than body parts. I can't explain how afraid I was that I'd throw a blood clot or bleed to death. I was so scared I kept calling to my mother!
I had a dream about her last night. She was a helpless infant in my arms. I rolled around in my wheelchair with her head on my shoulder. I made sure she was safe and warm. Safe. ...continue reading "Not Cut and Dry"
I'm not brave. I'm not. I'm not rolling with the punches, I'm just getting punched. As I said, I've walked through the fire and I'm all burned up. I'm skinny, starving for a moment of real rest, of relief. ...continue reading "The Brave Face"
I see "the surgeon" tomorrow, the one who amputated my toes. I wonder what kind of person it takes to look at a foot rotted black, take a saw and hack off a body part to be thrown away? What allows his mind to go there and his hands to follow? Though beyond repair, black as night, shriveled to nothing and dry, they were still mine.
My heart knows 100% that this surgeon was one who helped save my life, mine and many others. He is loved and honored, rightfully put on a pedestal. He has taken people with slim odds and brought them back from the brink. In my heart I see him that way, but behind my eyes I see the man who methodically removed part of me and threw me away.
I have a few more art supplies coming from Amazon.com which will give my heart another reason to beat happily. I don't look happy in the photo bc I'm not. I was at the beginning of whatever my body is doing right now. I'm hacking and spitting up, vomiting and utterly miserable feeling. That's how my body feels but when I get a visitor I perk right up and chat and laugh like my old self.
12 painful stairs to a tiny room. Each step felt like I couldn't cry any more than I did one step earlier. I made it up the stairs and laid on the air mattress with a slow leak and asked myself, "is it worth it?" can't I just stop taking meds and let nature take its course in a matter of days? Then the real me took a breath! I was reminded that this is very temporary. I'm with friends who, though of humble means truly love me. And honestly, I'd rather be here than in a nursing home with workers who like me but who don't do half of what they should.
The latest drama / trauma is that my insurance won't preauthorize the blood thinner medicine. Long story short, I have to travel every single day to get a shot at a clinic bc it's the only way my insurance will administer the arixtra shot. If I get it outside the clinic it'll be $1200 every two weeks! I've been traveling 4 hours daily for a one min shot at the cancer and hematology center. I'll do this daily until insurance figures this out.
Today I got a hold of some good CBD oil and something else I forget the name of. I spent $155 on the oil, pen and pure something or other. I can't remember the name. The white powder requires heat, thus the pen, but the hemp oil does not use heat. I started both today and intend to continue them so as not to so heavily lean on the major pain killers given to me.
Getting back to my living situation, less room with love makes me feel cramped but not suicidal. The pain and insurance ordeal made me question going on. I know I will ask again, why go on? Again I'll have an answer. I really want to live.
This isn't going to be easy here bc my room is up 12 stairs and I've got literally 5 feet by 3 feet of living space. This won't be easy but if I keep things in perspective, if I remember I have hope then I can do this, too.
I'll let myself cry and crumble. I'll let myself ask why, but I won't let myself give up.
That's joy on my face. Walking brings joy to my face. I did 125 feet today. Another goal met was to begin giving myself the Arixtra blood thinner shot, which I take once daily.
Next week we will work on stamina issues. I'll begin learning to balance myself climbing the stairs. I'm going to need to practice the stairs because when I leave here I'm going to stay with friends who have a room for me upstairs. I won't brave them alone. Hopefully nursing staff will be in place so that CNA's can assist with getting up and down. Yup, the stairs are a bit worrying but I've got a bit to figure it out. I may scoot on my bum while on the stairs. We'll see. The good news is, even though I don't yet have an apartment, I do have a safe, clean place to stay. ...continue reading "Victory Laps and Wobbly Steps"
July 8th I'll be discharged from the nursing home whether I have an apartment or not. Here's a shot of me holding my bears.
I worry about my lack of stamina and how it will prevent me from getting basic needs met. I'm not whole, not ready to be discharged to care for myself. How will I shower? I don't have the stamina for these things. ...continue reading "On fear and focus"
I wasn't nearly as afraid when I was in the thick of it. I knew what was stacked against me. I understood the odds were not in my favor yet I didn't constantly think about dying. I knew I wanted to live. Once I realized I may lose as much as both legs I tried to figure out how to live with it. Even at the time when I couldn't move at all and I couldn't feel from the waste down, I still tried to manage in my head how to live that way. If for some reason I didn't regain feeling and movement, I never once thought being bedbound was a reason to die. ...continue reading "A Thousand Miles"