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Someone to Watch Over Me
Someone to Watch Over Me

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"

Stone and Shadows
Stone and Shadows

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.

Faith Austin

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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.

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Altenheim nursing home June 2018

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"

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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"

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I was shaking from head to toe. I couldn't think. I was naked, in the shower with a nurses aid standing beside me. A black woman was touching me! I might as well have been a child with my mother in the shower, that's why I was shaking. It didn't matter that the CNA was there to help and it doesn't matter that this happened several days ago. It's still heavy on my mind, still makes me shake. ...continue reading "Surviving Triggers"

I hate Lupus. Lupus is the devil.

I talked to Dr D over the phone for my session. We talked about the emotional toll of this hospitalization. We talked about how things change so fast sometimes that it's hard to keep up.

There's a revolving door of changes. I can hardly keep up. Many changes are good, others a disappointment. I just need to stay the course.

Because I am unable to do 3 hours of physical therapy a day, I have lost the coveted hospital spot. I cried and cried. Now there's a scramble to figure out where to put me.

I'll get accepted to a nursing home where I'll do an hour of physical therapy, but will I be well cared for? Will I spend most of my time looking at the ceiling, unable to move? Will they change me on time or will I sit in my own excrement for hours like I see on TV? Will I be physically safe? Will I sleep well or have to endure a roommate? So many questions.

There have been major improvements in my health in the last few days, things no one anticipated. Life will be easier in some respects bc I no longer have to take a shot in the stomach every day for the rest of my life. They've determined that I can take pill form, twice daily, for the remainder of my life. I still have to take prednisone forever but I feel I have good medical doctors who will look after my interests. I'll have this medical team looking after me and monitoring. That gives me comfort.

Today I sat up on the side of the bed by myself. I took a photo bc it's a milestone.

I'm on Morphine , Oxycodone and Percaset to ease pain. Morphine gives me nightmares but it helps so I take it.

Friday afternoon some friends are coming up to eat pizza with me.

People don't know what to say or do so I tell them to bring food. Bring lunch meat and Doritos, 7up and something sweet. We'll chat and chew through the awkward.

One visitor said he feared not knowing what to say to me. Sometimes a person's presence is more powerful than their words. Despite not knowing what to say, he's been here three times. Thank you for that!

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I am not one who can handle a lot of physical stimulation. I didn't want to be touched. Movement and sound scare me. However, in a vulnerable state I have had to allow things to happen even if I didn't think I could handle it.

Since being at the hospital I've allowed people who resemble my abusers to give intimate care. I've allowed African American men and women to remove the gown, adjust my legs as needed then wipe my intimate parts in front and back. I have had full bed baths and depends changed or had procedures that required mostly nudity. I had to allow it.

From where I'm laying, I generally can't see the entire person, and I can't get up. I am vulnerable and require their clean intentions. Not a single inappropriate comment has taken place. They have been respectful and put me at ease.

At one point a Doctor was asked to wait 2 min while the Techs finished my gown because credentials don't buy rights to my dignity either. I appreciated him waiting.

I was terrified at first. Someone had their hands between my legs, spread them, and I had to allow it. I was angry. I didn't sleep a lot. But as the positive, safe experiences continued, confidence grew, with unexpected healing as a result.

Faith

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The Pages Were All WrongDr. D and I discussed a situation with my sister that came up that required I stick to my boundaries, as hard as it is to do.

Despite my mother having gainful employment, we spent a lot of time living in the car. I have slept with frost over me, slept on the wet street and in the sweltering night. Homelessness for me is a huge trigger. It makes me recoil, makes my mind want to run and never think about the horrors of it, the way it strips you of dignity and humanity. The way people hate you, judge you and look down on you. Routine homelessness in my childhood and young adult life with my mother, has left a scar that opens into a wound during the winter time.

When I'm cold I can't breathe because I can see myself lying under a blanket in a broken down RV with no electricity, no water, no heat, no lock on the door. I could see my own breath, see the frost build up on my blanket and hear my sister cry curled up beside me. We were so close to one another I couldn't breathe. There with us should have been my teddy bear, the last possession I owned, but it was lost in the car we'd slept in that ended up being stolen. Homelessness is a horrible trauma I wish on no one at all, so why have I refuse to offer my home to my sister in need? ...continue reading "Therapy Review: Hard Choices and Boundaries with Family"

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