My hospital bed allows me to sleep well. I can lift the head and feet which helps me rest.
Joe turned 15 on the first. Come April my CNA will have been here for a full year. She treats me well. I have a CNA on Saturday too. I like her a lot.
I have a trip in May but a good friend of mine suggested we go to New York in September so I’m saving up. I’ve started using the piggy bank to bank roll the New York trip.
My new recliner is more than I could have asked for. I was going to purchase one. I even had one picked out, but friends came up with a free chair for me. It sits well and lets me raise my legs. I’m so thrilled. Joe sits with me either on the arm or between my feet.
The money I would have spent on a recliner I put towards a new manual wheelchair. The old one I had for six years is being donating for parts.
I’m comfortable. My heart is at rest and I’m fully in the moment. I’m grateful for today.
Publishing this art piece comes at an odd time seeing as how I just talked about store workers profiling and following me and my caregiver at the store. It’s also not concerning imaginary audience / fable but an all together different type of being watched.
I was never sure why my mother was watching me. I was more concerned by her method of watching me. Although I know she watched me and my sister around the second grade, my most vivid memories are the 4th grade when she wore her trench coat and stood behind the door motionlessly.
The coat was her regular coat. It was a black trench coat. When the lights were out we couldn’t see her, nor were we looking for her. But if we saw a motionless figure in the hallway it scared the crap out of us. She’d make sure we’d seen her before walking away. No words. Just walks away.
After a little while I worked hard not to show I was afraid. I’d either say nothing or turn around to the door and say something to her. I had to guage how far I could go in pretending she didn’t scare me. I knew there was a response she was looking for. If I withheld that response too much, I might regret it. When being beaten with a dowel rod I knew I had to give the response she was looking for.
When being watched in the room alone, when showering or using the restroom there was a response she was looking for. I always wondered if there were times she wasn’t trying to get caught and see my reaction. This game of watching went on all the way to the day before I moved out. She listened to phone calls when we had a corded phone. I owned nothing, especially my body.
When I moved to Florida with my mother’s sister, my cousin and an uncle by marriage, I thought life was going to be good. He said he would treat me like his own daughter. That one sentence makes me want to break into tears. The irony of it is cruel.
My cousin was his step daughter. She endured more abuse than me. Having me dress up. Making crude comments. Watching me. If I turned around and saw him watching through the cracked door, he too would stay just a few seconds longer before quietly leaving.
I’ll be keeping A History of Eyes on Me a little while longer. It’s hanging in my own art area beside the painting She Speaks the Dream, which was created in 2017.
Observations – The painting called Roses for Jane was remade. In addition to more eyes, I brought out the figure in the back then made a dramatic leap by dividing the main figure in black and white. I kept quite a bit of the original twist and turns while softening her face by one notch. As a person who uses sunflowers for emotional expressions, it interests me that not a single flower is on the original piece or the new. The main figure is no longer standing in the dark.
Content – Disordered eating. Binge eating, no purge. Shame. Hopeless feelings. Anxiety. Inpatient for medication management.
I had therapy today where it was decided that I’ll have a short set time with extra home care. I’ll be adding a 3 hr day to Saturday until the beginning of the year.
I really have a hard time keeping myself together. I’m close to needing inpatient. I’m trying to get around that.
I burst into tears 3 times Friday, out of nowhere. Thursday I was so anxious that I felt like I needed complete quiet bc I was so overly stimulated. Every sound assaulted me. I couldn’t sleep until around 6am. My head has been all over the place.
On the 8th I’ll go to see how my eyesight is doing with the Pseudotumor cerebri. Peripheral vision is gone on the left side. There’s a large blind spot in the middle of the left eye. I have some issues on the right, mostly fatigue, I think. Def worries me.
I was supposed to lose weight so I can avoid a spinal tap. Instead of of being thinner for my opthalmology appointment, I’ll return 30 lbs heavier. How will I explain that? I have to take the psych meds and I have disordered eating. It’s not going well. I know my eating is disordered, maybe even addiction level. I have the pull of increased appetite from those 2 meds and then my disordered eating.
The difficulty is that I can eat and eat without feeling anything. I’m not satisfied nor am I hungry. I’m empty. As cliche as it sounds, I keep trying to fill a hole. So I keep eating, mostly sweets. Binge eating is a problem. The other day I ate six apple fritters in less than 30 minutes. The day before I had twelve strawberry pop tarts in about an hour. No other food those days bc I didn’t remember.
Eating to sooth emotions is a problem. Baked goods make me feel better. Coffee and tea make me feel better. It’s like I’ve got to put something inside myself, only once it’s been eaten the soothing is gone. 1) I can’t tell that I ate or drank. 2) I’m back to whatever I was feeling that caused me to turn to food. It’s a vicious cycle.
After the 12th all my teeth will be pulled. I’ll wait for them to heal before getting full dentures. Eating will be difficult. Having disordered eating at that time worries me.
Now that I have a steady CNA and now that Dr D works in a building that is handicapped accessible, I can go see him. I’m just embarrassed! I’m embarrassed about seeing the ophthalmologist this coming Friday. I’m embarrassed to see my primary doctor. I’m embarrassed to see my psychologist.
I thought to myself the other day, there’s very little understanding offered to people who are overweight. At least some understanding is offered to people addicted to street drugs. Fat people are blamed and mocked as if the reasons for my addiction are any different. Life hurts. Same story, different poison.
I feel lost with my eating issues. I keep thinking I’ll get a hold of it. Add disordered eating to the pull of medication side effects from seroquel or my Pregabline and I’ve got myself an inner war I’m quickly losing.
Content – Domestic Violence, sexual abuse, negative family response to child abuse, emotional, CNAs
You know how you listen to a person complain but they fail to change what they’re complaining about? You try to be supportive but you just end up frustrated because the person will not make a change. I’m doing something like that right now.
I needed to make a decision, then I needed to act on it, so I did. I didn’t make the decision based off of what others might do but off my experiences. So, for now, I’m keeping the psychopath CNA that I have because in addition to her psychopathy, she shows up to work every day, on time and without those ridiculously long eyelashes and fingernails. This 65 year old woman doesn’t change her hair every 3 days which means I recognize her when she arrives.
When my CNA shows up she’s not drunk and her car has insurance and doesn’t smell like weed. She’s clean. She takes me to the store, on and on. She’s not obese. Why do they send obese CNAs to help an obese patient living in a tiny apartment? Make it make sense, boo. So yeah, I’m keeping her and her psychopathic tendencies until further notice. I intend to complain about her behavior. You don’t have to listen if you don’t want to.
Dr D asked if I was being abused. I told him I’m not sure I’d admit it if I was. I wonder if I’d respond like a battered wife, again. I know I would, which is why openly discussing issues with her to my therapist will be important.
I think I’d be embarrassed to say I’m being abused. The fear is that I won’t be believed or that I’m being too sensitive. I worry I’ll then be labeled as someone who has to be watched or I’ll make accusations. Let me explain.
After time in Florida with my now deceased uncle and my mother’s sister, I returned to Indiana on an emergency flight. In Florida I was going to be left home alone with an abuser, the uncle, for a full weekend. Very long story short, when I got back to Indiana I wasn’t allowed to be alone with my grandfather anymore. One aunt said she didn’t want me to have the chance to make accusations against him. I felt marked and like everyone would be on guard around me for fear I’d strike with a terrible accusation. I couldn’t be around any males alone anymore out of concern for them. I worry about the same kind of thing happening now.
I need help sifting through the drama and mayhem that happens here sometimes. I need help sorting through my emotions concerning treatment by any given individual. Why? Because my eyesight has been altered by child abuse and abuse in romantic relationships. I don’t see as clearly as I need to which is why I will benefit from bouncing things off my therapist concerning CNAs.
A second pair of eyes will be helpful especially when that person understands I’m not as emotionally strong as I come off. I don’t look like I could be abused and say nothing. I sometimes feel just like that little girl in the old photos on my wall. I’m not though.
I think it’s sad that I need to accept a certain level of drama and mistreatment as normal CNA behavior. I’m not a person that just anyone can work with. My mental health often clashes with the CNAs mental health. We are both guilty of impatience, preconceived ideas and plain ol being tired of people. Putting these CNAs in with us is like putting the odd couple together. It either works or someone is flipping out. It’s so stressful.
When she comes in I look at her to see what mood she might be in. Yeah, there are serious issues here but so far things remain under control as far as abuse goes.
This battle with caregivers will not end for me. I’ll have caregivers for the rest of my life. I’m learning how to deal with them and I’m learning how to be strong enough to speak up for myself when it comes to abuse.
If a person wants to argue, I can argue with the best of them, then tell everyone what happened. But if I’m struck, intimidated or threatened, chances are I’d say nothing. That. must. change.
I paid a heavy price in pain for a little bit of freedom from my wheelchair. I decided to walk about 100 feet up a ramp to my apartment. I needed to stand up at my normal 5 foot 3, and see the world from the angle I was accustom to.
The problem with walking outside is that I can’t feel the ground under me. With shoes on, I can’t feel the ground. It takes a lot of concentration. But today I needed freedom. I swear I feel like a caged animal willing to pay a high price to have someone open my cage and let me out.
The price I paid for about 100 feet is extreme pain in both hips. Both hips have avascular necrosis. I’m having terrible spasms. All of this just to stand up and walk for a little bit.
Was it worth the cost? Yes, for a few moments, walking in the sun, yeah it was worth this.
I’m in bed right now willing a slice of pizza hut over here. Lol It’s in the kitchen. Lol. But I’m writhing in pain. My legs hurt so badly, they’re squirming all over the bed down there. The pain is from the ankle up to the knee then both hips. I really want that pizza though lol.
My little walk reminds me very much of my little painting called Up Hill Battle. I guess sometimes the hill seems small to others but that doesn’t mean it’s not a battle for the person trying to climb it. We never know how much baggage a person is carrying, mental or physical pain. Even the slightest incline can be a struggle when the person walking is carrying a heavy load.
The miniature is complete. I gave it a nice seal yesterday. My intent is to have it in my shop this evening. If you don’t have an Etsy shop but there’s interest, you can send me an email. I accept PayPal. All contact info is on the sidebar.
I’ve been craving pizza for days. I really want that pizza in the kitchen but the price is a little high for me to get up and get it. I’ll use patience. I’ll rest then have pizza later.
It was still a nice day. I love outing day 🙂 Please let this CNA stay. I adore her.
It’s sobering to think that no matter what we do or don’t do, bad things happen, sometimes in rapid succession.
There’s an historic example of a man who lost loved ones, employees, finances and his health in no time flat. When I think about his life before disasters struck, I can see he did everything right, then blam! When reading that account there’s something I noticed, something I missed about it 5 years ago. He asked a lot of questions to help him understand his situation.
This poor guy got a lot of flack from people who should have supported him but didn’t. True help came from an unexpected sourse. But what gives me pause is how the gentleman handled himself during the entire nightmare. He listened more than he spoke. That’s significant for me right now.
I have so much going on with my health that I wonder how much one body and one mind is supposed to take? I’m not alone in piling up devastations.
I’m shocked and horrified by what my friend from the hospital in 2018 has gone through. It’s not bad enough she has Lupus, was on life support, had a stroke, had to relearn everything from being paralyzed to the point she was only able to move her pinky finger. Do you know the fight it takes to come back from that?
She spent significant time in a nursing home which is where we met. After she left and hoped to move forward, she had cancer and needed a double mastectomy! All without the support of her parents, for whom she openly grieves. Really?! Can our girl please have a break, too?
I think I understand even better why it’s best to take life one day at a time. I make arrangements then do day to day battle towards the fulfillment of the arrangements / goals. A day at a time is hard enough. I’m not about to double up on troubles.
As it stands, I’m going to need 2 hip replacements due to avascular-necrosis (AVN), the left is first. I can hardly sleep bc the pain has been high. Sitting can be difficult.
I’m discouraged if not fearful. I don’t want to have a knee jerk reaction to anything but I do want to prepare. I’m so grateful for having a good CNA. Please let her stay!
I’m working to downsize my responsibilities. In addition to selling 5 of my largest plants, I’m going to need to downsize pets before a yet to be scheduled total hip replacement on the left followed by an eventual total hip replacement on the right.
I’m going to rehome my two Madagascar Tomato Frogs as one complete unit. They come with their bioactive terrarium. I placed them on Marketplace and listed the various plant types, hard wood, hides, lights, screen and locks. These were purchased from Josh’s Frogs as early juveniles. They remain healthy at age two.
I hate to see the Tomato Frogs go. There’s no way on earth the 100g White’s Tree Frog terrarium is going anywhere. Don’t even ask lol The only pets being offered are the Tomato Frogs. Everyone else is staying. We already know Joe Schmoe’s place is secure.
Emotionally I feel hopeful about this. I fear having hope that maybe…. maybe with new hips I might walk again. I’m afraid to put my energy into what seems impossible.
As I was writing this, it occurred to me, I shouldn’t feel stupid just because something I hoped for didn’t turn out. For some reason I thought, if I openly hope to walk again but it doesn’t happen, I may feel foolish. And I will have made others hope without pay off for their support. This is wrong. Who wouldn’t hope to walk again? Who? And what friend witholds support because their personal pay off isn’t high enough?
I fear disappointing people. If I don’t walk will I have wasted their time? l honestly feel ashamed that I’m getting ready to put my friends through yet another ordeal. The hip replacement isn’t the ordeal, it’s my blood disorder related to Lupus that has me so worried.
My hope is to listen to the support of my friends without countering it with fear of disappointing them.
I intend to speak less and hear more. I don’t mean silence. I mean that my personal expressions and opinions don’t have to be shared in full, at all times. In my private life, I need to allow others to express themselves more.
There’s a time to speak and a time to listen. If I’m talking to a friend, I’ll hear more and speak less. In a group of people I don’t know well, listen more, speak less. Perhaps by not dominating the conversation I’ll hear the tid bit I need that changes the day from burdensome to manageable.
What an exciting few weeks. I went from mourning my old CNA to getting a new one with whom I am very well matched. Having her means I can let her do some things and leave other things to me. I can keep up with my letter writing and other forms of reaching out to people. And I can keep up with my artwork.
My goal was to re-open my Etsy shop but I’m not ready for that. I can paint and sew but right now I need to wait a little while longer. I’m ready to do the art, I’m not ready for the stress of opening up the shop and getting stuff out on time. The goal is to do so but at this time there is no tentative date.
I’m pleased that rumination has decreased, which makes thinking much easier. The depression is better under control, and my physical health is holding steady. Concentration is crap. It’s awful but at least I’m completing things even as I bounce from project to project. I have zero concentration any more.
Anxiety is wicked. I’ve changed up how I do my Delta-8 so that it will help with anxiety more and kick in sooner. Sadly there isn’t any guidance on this. It’s trial and error, but at least it’s still federally legal and the cost is still within my means.
THC brownie bites
I baked refrigerator dough cookies and brownies. I cut them into dose sizes then dripped liquid THC over the top of the goodies. Works like a charm. It can be done with THC butter, too.
THC cookie bites
My metabolism is deathly slow which is why it takes 2 hrs for a bite size edible to kick in. It lasts up to 5 hours though.
Pain is not my friend. Anxiety isn’t either, but the depression and physical pain is significantly less, which has raised my quality of life. I’m still a bit reactive but not even close to how I was. Eating is a chore but that is getting better, too.
Wow. Food prices! No matter how much food costs increase, my budget for food has not. It’s been stuck at $200 a month for a while now with no sign of change any time soon. I’m blown away by food prices. I’ve been trying to see where I can clip pennies but I’m not sure where anymore. Perhaps it’s not totally a bad thing that I have zero appetite. Amazon Fresh is so high right now that it’s straight up robbery!
Menopause – well, I haven’t gone to jail yet. A terrible hot flash at least once an hour. Decreased ability to handle stress. I click on people! An Amazon employee had me so frustrated that I asked to speak with someone else. She said, who? “I said, I don’t care, anyone but you.” I really wish I didn’t say that to her.
So, things are progressing in a manner I couldn’t see 6 months ago. I want to remember that even in the worst circumstances, everything changes. And since I am involved and invested in life, chances for positive change is strong.
I’m happy I lived long enough to truly believe and trust that things change. Youth doesn’t provide enough life experience to fully grasp that things change for the better and you can move past what feels impossible. I wish my brother could have understood that.
I’m in my feelings today. I feel very limited, if not left behind. I’m mad at wheelchair life right now.
I truly enjoyed being at the park with friends for a bonfire back in October. That was so healing. Right now though, I long to wander, to hike trails and sit under a tree with my dog. I miss that today.
I hope to get an electric wheelchair soon which would let me get to the front of the building, down a very long ramp then finally on the sidewalk. The sidewalk stops at the property line. No sidewalks. That’s a problem. We’ve lost 2 residents in 5 years bc they rolled in the street. I’m not doing that. There’s simply no where to go off property that’s wheelchair accessible.
I can’t tell you the longing I have to go outside my window and get to those beautiful rocks. I was told that our screens raise up. I don’t have to take it out then struggle to get it back in. I’ll have care again soon so I might test that.
The best way to manage my aching heart here is to do something for others. I feel like a trapped animal right now. Well, let me get outside this trap by reaching out.
Sitting in the grass keeping my problems in perspective
I’m so happy to say that my pen pal list has maxed out. It’s full. I actually have 20 letters that go exclusively to the elderly in nursing homes. They write back 🙂 Also, all the spots for plant homecare / babysitting are full.
I just added a monstera deliciosa from a wonderful person who needs nursing home care due to dementia. These’s a spider plant, monstera, rex begonia and an African violet that I’m looking after. Most are of memory care patients but one is from a person who takes care of her grandfather who has dementia.
It feels good to help with their favorite plants that they’ve taken care of for a long time. It’s something I can give to my friends who have been so giving to me.
There’s a plant that belonged to three generations of very lovely people. I’m so honored! Being able to take the plant torch is an amazing feeling.
I know how it feels to be so broken that it felt as if I’d die where I lay. But it’s true, if you hang on for one more day the urge to act in a permanent way will not be as strong.
When I couldn’t pick myself up, even after the wait, I reached out and my friends reached back. I’m grateful for that.
I sat down to hand sew dolls but my hands cramped and spasmed terribly. I thought I’d try to see if I could use my sewing machine despite half a foot amputated and despite significant nerve damage. I had my CNA bring it to the table but I didn’t try anything until after she left because I didn’t want to embarrass myself if I couldn’t properly feel and safely control the pedal.
There was all kinds of anxiety because I worried I’d press the pedal at the wrong time and sew my hand or something. Anxiety was high but so was my drive to find out if I could do it and save myself some pain while making dolls.
When I turned it on I acclimated myself to how the pedal felt under my foot. I got my brain to recognize the new sensation without automatically recoiling. After a few minutes I pushed the pedal with the machine turned off. I got used to that and got brave enough to turn it on.
I’m so happy I tried. I’ve used the machine several times now and what I discovered is that the nerve damage affects sewing ability. Sometimes the stump hurts too much to add any pressure at all or I can’t feel or control the stump enough to press the pedal. Those issues prevent me from regularly using the machine, but when I can I will use it to my advantage.
It’s been a week since I’ve used the sewing machine but when I was able I sewed the hands and legs for six dolls.
My hands want to give me trouble and my feet are a mess but between the two I am able to offer up dolls I’m proud of. They’re now about 25% sewn by machine but 100% homemade. I still hand paint the flesh tone, put it all together by hand and hand stitch in the hair. I still hand draw and hand paint the faces. The only thing that has changed is using the machine to create the arms and legs. Later down the road I may use the machine to help make the doll’s dress. We’ll have to see where my confidence leads me.
As mentioned in my last entry, I’ve started making bears again. I’m not using the machine with these which means it’s taking longer to finish them. I will post my finished products as soon as possible.
