Skip to content

3

Here's a shot of my frog infuser and plants in the window in my room.
After physical therapy I retreat to the plant and tea spot for a little quiet time. I look forward to seeing these get bigger. My hope is to add a peace lilly to the group, then I'll be finished with the collection. I figure I'll spend a few bucks on that w zero guilt for the splurge.

Six or seven different plants came in one planter. I took them out and repotted them. Now I'm waiting for them to snap back and take off growing. The small pot of lambs ear I snagged from outside. I probably won't keep it.

Faith

3

Today in physical therapy I stood up on my left leg. I wasn't happy or excited. I was incomplete.

What I want is to put my off brand Converse tennis shoes on BOTH feet, grab my cup of Earl Gray and walk back into the life I had. That is complete, that is what I want.

I also want it to be untrue that it would take 2 years to walk again.

I'm sorry that I'm not all thrilled that I stood up. I do feel appreciative for what was done for me and what is being done. It's not that at all. I'm grateful, but I'm also saddened by the loss. What time has there been to take in just how devastating the last few months have been? I've been counting my blessings because I narrowly lived, because I beat amazing odds. But I have not really digested much else. Now that the dust is settling I feel the weight of loss. That weight is heavy weather I stand on one leg or lay here punching letters on the screen. The loss is substantial, and it hurts.

Faith

Dear Head,

We aren't friends today. Your behavior has divided us, putting a rift and a scar in an already shakey relationship. At this very second I can't tell the world all you've done because my body is attacking me with the strongest sleep spell I've ever felt. This half awake, druling, snoring, head bobbing, heavy eyed fight has been lost. I'm captive with no choice but to surrender. However, when I'm released, I'm going to tell them everything. I'm going to spill my guts and tell the world how you, brain, tried your best to depress, discourage and break me. I'm going to tell them everything as soon as my body releases me.

Lupus fatigue & depression, bites.

8

My wounds aren't pretty. At one time I saw huge boils on my feet and ankles. I saw my feet turn black and the skin slip off. I saw my toes painted with medicine that turned them reddish-brown and intensified the horror. And yet there is beauty in it all. How can there be beauty in blackened toes and top layer skin that has died? Because I'm healing.

I've even photographed from the beginning to now, boils and all, and new skin under the dead where the boils used to be. I have photo proof that my Designer created me to heal. Despite flinching at horror show type wounds, the stuff of Hollywood, I see beauty in my design and agree that I am wonderfully made.

I got a different wheelchair two days ago that is easier to use than the other. I can get myself around so much better. It seems in the chair I have a need for a security blanket over my legs. I have a feeling small afghans and I will have a special relationship from here on out. I feel more hidden, less self-conscious with a small blanket over my legs. ...continue reading "Wonderfully made. It’s complicated."

4

I feel fear more than anything else. I'm afraid of the pain, afraid of vulnerability, helplessness and being left alone for long periods of time. I fear what I can't do such a get up on my own. Every time they put the wheelchair beside the bed and have me sit to get in it, there's a feeling of dread. I dread trying to move legs I can't feel.

I fear falling. I fear angering people who may take advantage of my vulnerable state and hurt me physically.
I do my best not to be ruled by these fears but I certainly feel them.

A change that took place today is that my insurance no longer pays for a private room. In a few hours I'll switch to a serious down grade, w a roommate. When I heard I just cried. I have to figure out what happened and get my room back. They're going to move me to long-term nursing care room w a roommate. I'm not happy! This all happened so fast and it makes me nervous.

Despite not even being able to get out of bed on my own or even being able to change my own depends, insurance feels I'm ready to return home w skilled nursing help. Um, no! What home? I still don't have an apartment.

My head is swimming. Things change so drastically.

Update : see comment section concerning now having a private room in long-term care.

Faith

4

I asked the physical therapist how I'll learn to walk if I can't feel my legs. He said I'd be taught to walk in front of a mirror so I can see my legs and make the mental connection to move them.

He went all over the legs and said the correct muscles work and that I'd have to retrain my brain signals to move my legs. He said, in time, up to 2 years, I'll go from the bed to the chair, a walker then walking on my own. Of course my head got tripped up by 2 years but the bottom line is that my walking prognosis is positive.

Despite being oxygen depleted from the waste down w collapsed veins from the hip down, and the blood clot on my heart, they feel I'll make a full recovery and enjoy a strong quality of life. ...continue reading "The Hemoglobin Nightmare"

2

A man kept a house with several women tied up with chains. Some he broke so that they didn't try to run. He kept a lion that he fed live humans. It was the largest beast I'd ever seen.

I and another woman were caught as prey. We were in a container waiting to be eaten but I saw a way out and took it. As I escaped the grounds, the Master of the house attempted to stop me. He was furious that I tried to get away. How dare I get so far away from his traps, from his control. He was angry, offended and really wanted to the mastery over me, to throw me to the lion. I was getting away until the Mistress of the house emerged and demanded I return inside. She told me I had to go inside, I had to listen to her. The Master couldn't believe his fortune, that I'd escape the property only to willingly return at the voice of a dominate woman. He was so excited he could hardly contain himself. I woke before reentering the house.

Dr D and I discussed the dream in session today. We talked about how it feels like the Mistress is more my situation than a specific person. The Lion is the beast I face. I'm not always strong so I'm the broken woman who won't run, the new captive not yet broken and the spirit that'll find a way out. But when it's all said and done, I still have to face the Lion in yet another surgery. I'm torn and will be torn more. Parts of me are gone that I can't get back no matter who I out smart or out run. ...continue reading "DREAM : The Mouth of Lions"

4

I got word that I'd transport to the nursing home around 5:30pm yesterday. I was nervous, not sure what to expect. I got here and was very surprised to see it as nice as the virtual tour I took. They even had dinner ready for me which turned out to be very good. I've eaten 3x now and the food is good here. What a relief.

I love my room. I've got a small fridge w freezer, microwave, sink area. I've got a table and chairs, an XL restroom, good closet space and a small sitting area. The bed sleeps well. I have wifi and cable TV. I don't watch TV but the TV looks nice. Oh, and it doesn't stink! I was worried about that.

Tomorrow Dr D will call for our session over the phone. He's been out for a few days but he'll be back tomorrow.

I'm going to start working on getting a few watercolor art supplies here so I can paint. I've got a book and a few watercolor pencils but no brushes here. Soon I'll snag a few basics so I can get back to creating, get back to some art assignments.

Faith

Surgeons, Doctors and Nurses make decisions for me based on their expertise. I depend on their knowledge and background to assist me during this difficult time in my life. During my hospital stay, I've had to give confidence to Physical Therapists as well and accept that decisions w my care will be for my best interests.

I learned today which PT says I am unable to complete 3 hrs daily of physical therapy. That 3 hrs was a requirement for that private hospital I soooo wanted to go to. When she put in my decided, based on my abilities, that I'm not ready for it, all my placement plans changed. I'm already uneasy and triggered about losing my apartment, rendering me homeless. When I lost that room I was not happy.

I worked with the Therapist today and we did just fine. I like her a lot. After being in the hospital since February, I've been given the ok to sit up 1 hour each day. I'm going to paint and eat lunch.

Had I been asked if I could do 3 hrs of physical therapy each day for months, I would have said, "Let her fly, full speed ahead." It was good and accurate and right for the Physical Therapist to say, "One hour is her ability range." Even when disappointment may result, I need strong clinicians in my corner.

I did find a nursing home placement on the same side of town where I'm from. I won't feel so displaced bc I know the area, as do my friends.

Of course I'm having another moving day situation involving finger food and friends.... in that order cause I really seem to be hungry right now. All I think about is non hospital food. Lol Anyway, I get a room full of friends after my move who will be here to support and cheer me forward. Also in my support are individuals from Seattle, Washington, Oregon state and Ohio. Their out of town love has been felt as well.

Faith

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!

%d bloggers like this: