Lupus: Destruction. New Home

Evevn though I’m not over here actively dying of kidney disease I’m kinda flipping out about it. With Lupus the most precious organs you have are the kidneys, lungs and heart. Lupus is going to attack them!

The only thing wrong with my heart is the right branch bundle block and the left bundle block. No artery disease. No failure.

I have three times tested for difficulties with my liver which means I’ll soon see the specialist.

Things are yucky right now. Day after day of yuck. Lupus rolls through damaging whatever is in its path.

Thursday is the move! The place I’m moving to has an entire care system. They have :

  • Independent Apartment Living (me)
  • Assisted Living
  • Nursing Home

There’s a transition program in between Assisted Living and Nursing Home but I don’t remember what it is.

I llike the idea of being set up with a very nice health system on the side of town where a big part of my support system lives.

I hope things go well here. I’m looking forward to a new home.

Faith Magdalene

The Damage. The Appreciation.

My kidneys are weak but not dead. That’s great news. I’m drinking 64oz of water a day, doctor’s orders. As long as I add a bit of fruit to the water I really don’t mind at all.

I’m in a decent amount of pain because of the inflammation and the rash associated with kidney disease. Who knew the skin could be affected so negatively when the kidneys go down hilll? My back has a nice rash and my legs get so dry that I flake like Tony the Tiger. It’s not great!

There’s been zero art. I look forward to painting in the new place. The new place will also bring two new caregivers because the one I liked so much wasn’t able to continue. In the new place I’ll have a female in the morning and a male aide in the evening. After him I’ll have a person for five hours until midnight. I have overnight care. They’ll lock the door and return in 9 hours.

All that so I can live independently. I appreciate it.

Now for tea.

Pink Crocs vs Amputee

I’ve been wearing my shoe without that so called prosthetic I hate so much. It seemed to be going just fine. No issues, or so I thought. Lol

As it turns out a well established spider web was in the toe of my pink cross. There was a small piece of cereal in the web, Lucky Charms. I’m not making this up.

I wasn’t sure what to feel. I was horrified, intrigued, humored and humiliated; simultaneously. I’ve decided to go ahead and do what the surgeon said is an alternative to wearing the prosthetic. I’m stuffing my left shoe. All left shoes get stuffed. I am not walking around with a spider housing addition at my stump. It’s wrong.

The little picture in the photo is a very, very old white sketch on top of encaustic art. I melted Crayola wax, slowly and moved it into position. I enjoy encaustic and print making very much.

Faith Magdalene

It’s Just a Foot

I owe you an apology. Please, wake up, I owe you an apology. I said it was just a foot and not worth dying over because I didn’t understand. Tears swell in my eyes. My lips begin to trimble as I stand before headstone after headstone. Wake up! every Granny, aunt, uncle with a leg, arm, hand or foot they let get too bad until it was too late and tell them I was wrong. It’s not just a foot is it? No. Not when it happens to you. Instantly you understand your humanity.

The wind hesitates. I pretend to breathe. I owe you an apology.

I didn’t know the brain would need to rewire. I didn’t know the fear you’d live in of another amputation, or of physical therapy.

“She’s your nurse” doesn’t contain the impact a stranger has of touching every inch of your body at all times, of dangling fingernails over all your belongings leaving nothing untouched, feeding garbage food you can barely taste because life itself is stale.

Sweetheart wake up. Wake up. I touch another headstone. I didn’t know it would be this hard.

For the living

I’m colder than I’ve ever been. I’ve felt more pain and fear in the last 7 years than the previous years of life. Only 2% of the time do I think to myself, I should have died. Most of the time I’m happy I made it but I’m in the crowd that has to say I was wrong to pass judgment on people who couldn’t see the amputation through. It’s not just a foot. I was young. I didn’t know what I was saying. Who am I to say who does or doesn’t have the strength to endure an amputation?

Faith Magdalene

Awake Stroke Recovery Art

Finishing “Awake” took much effort but it is here, reworked, beaming with color and striking details.

Bellow are my comments.

I woke to a new existence somewhere unknown, they called it a stroke. Now words come like slow snails, or they are kidnapped so as not to form on my chapped lips. 

I painted the emotional roller-coaster I felt as I played tug of war with my body, emotions, speech and interpersonal relationships. Ultimately I felt lost, defeated and misunderstood. I also thought I’d never paint again.

Grueling therapy and persistence with paint brushes helped me get to the point where I can say I’m awake. I’m awake to what has happened and the I’m happy the hardest part of it is behind me. Awake is about surviving the body after stroke and making it my new home.

You will find more images and a short video on Etsy. I also accept PayPal.

Thank you for letting me talk. Thank you for visiting SUNDRIP Art for Life.

Faith Magdalene

Validation. Symptoms. Wording.

A nurse came out to assess me for continued in home nursing. I asked about the difficulties I have with speech but not with reading. She said my speech and memory issues are related to the stroke.

For example, say I may want a peanut butter and jelly sandwich. I’ll get the bread and peanut butter, however I will ask the nurse to get the jelly. I can see the jar in my head but the word won’t come out for anything. But if the jar is turned around with the label facing me then I can read it and say “may I have the jelly please”. Otherwise we could be sitting there for three weeks with me trying to get the word jelly out of my mouth. I can picture the object in my head but it’s as if the word is trapped.

I’m not accustomed to being believed. It was hard to admit how often it happens.

The nurse said this is related to the stroke. I thought I was just growing stupid with age. As it turns out, it’s not stupidity at all, but a symptom of something else.

Sometimes the words used to describe myself are a bit harsh.

When in bed, only in bed, primarily on my right side, heavier at the feet and head, my body jerks really hard, like really hard. Hard enough to wake me. I have a semi electric hospital bed, noise thing. I jerked really hard, slammed on the bed frame and woke the neighbor directly above me. We have paper thin walls, but still. Not sure if the doc is going to take that seriously or if it’s going to get brushed aside like many things appear to. I know when I lie down I’m going to have to deal with the hard jerking around. It seems to have increased lately. Interesting.

Faith

The Whole World is On Fire

This company, CICOA, that serves the elderly and disabled to find so called care companies to come in the house has now been told that I have DID. They, CICOA, told the doctor if I wanted care I’d have to give them both psychiatric and medical diagnosis. I was not asked about this.

The company was told I have DID. They passed it along to the under educated care companies who pass it along to their caregivers! Are you joking? Are you joking!!

No matter what company I go to they’ll know I have DID, the caregiver may know as well. Everyday people don’t need to know this.

In Indiana, most of these places aren’t run by medical professionals but by well meaning individuals who saw a need in the community. But well meaning doesn’t mean you know what to do or not to do or to just leave it the heck alone.

I told the CICOA worker that I spent years, years making sure my DID didn’t get out but nope, here we are, you guys couldn’t let it go. I said, so now that you know, who is educated enough to manage it? None of you! Not a single person in that building has the slightest bit of education to manage my disorder. She said, I have a bachelor in psychology. What’s that supposed to do? If you have a BA then you should have known to be more careful.

Curiosity killed the cat. The cat is me.

It matters that uneducated people are going to have this information and that I’m going to AGAIN hear how I need to just pray the demons out, spit them out, excercist, oil, rituals and that I have demons. I won’t go through it. I won’t go through it again. I may not have to bc I gave CICOA quite the unedited tongue lashing!! They may kick me out of the program. I really went off.

I spent so long holding that secret together and it’s over because J is nosey and gave a form requiring my mental health diagnosis. All that happened on the heels of my CNA getting fired by me yesterday morning, the CNA I liked so much.

We’d begun fighting, outright arguing daily. I’d apologize, she wouldn’t. I started to worry about a few things I couldn’t prove but was suss of.

The last argument was when discussing going to the grocery store. I said I’d like to go to the pet store first because it’s less energy than the grocery store. She said, I don’t want to double back. I said, but as a disabled person it’s easier on me to do the easier thing first. She chimed in with, I have plenty to say about you being disabled but we don’t want to have that conversation.

It hit hard. I was dazed. Seconds later I said, yes, we need to have this conversation. Long story short, the Certified Nurses Aide believes she is qualified to cancel out all doctor diagnosis for her punny, sad, opinion. I’m amazed! Amazed. There was no way she was working here if she didn’t even believe I’m disabled. My goodness.

As angry as I was that I had to fire her, I did forgive that stupidity. She can never work for me, but forgiveness is offered to the CNA and her ridiculous actions. Why? So I can leave just a tiny bit of peace in a world that is very short of it.

As for CICOA there is no such forgiveness…. This dumpster fire is part of the rest of the world that’s on fire. Cause if you hadn’t noticed, the whole world is kinda on fire right now.

Michael Joseph is ok but not great. He’s sleeping a lot. He eats well. Still drinking. He’s clingy then he goes back to hide under the bed.

I took a photo yesterday bc I just turned a corner in life and I know it. I’m not sure what’s around the corner, but I didn’t just turn a corner in life. I could feel it coming for a minute.

Faith Magdalene

The Deluge – Now in Etsy

The Deluge is complete and is in my Etsy shop. One of the things I point out about the balance. The woman standing has legs and feet that are wound around. Each foot meets a tiger lily, a child and a purple flower in full bloom.

It is haunting in some areas. Those are the areas to leave behind. Those are the areas of the past that I can’t take with me to the future that I am building here. I’m not going to another planet. I’m right here. But some of these things need to swim free because they no longer have a place here.

If you visit my Etsy it’s worded better 🙂 You may also purchase through PayPal. Please see appropriate email address on the contact me area.

Thank you for listening,

Faith

To Jorge II, With Love

Remember the brown Dr Martens I was super in love with? I purchased them after someone gave a surprise donation via PayPal?

Well, I had to go back for the black ones 🙂

These shoes are very amputee friendly. I can dress myself which is huge. I feel so normal and like myself in them. There’s nothing about them that’s been altered to fit that ever changing stump. I now have two really cool shoes that expand just right.

I even got the black shoes nearly half off.

Dr. Martens for the win, again. I swear I want to write him a letter and tell him how his shoes make me feel normal. I wont cause that’s weird, but I’m really happy this style hit the market.

I’m also grateful for fun compression socks 🙂 Fun compression socks and these shoes? I don’t know what to do with myself!

Faith

Rough Start. Grace to End.

When all else fails, buy flowers.

My CNA and I like each other very much. She said she’s here to stay. I believe her. But today was rough. She’s got a personal crisis. Instead of continuing to argue, right in the middle of the situation I said, I call grace. I choose to give grace.

I know something isn’t quite right. I’m not going to argue or raise my tone or question you. It’s over. I choose grace. She said nothing and got in the car to take me to the store where I found these beautiful discounted flowers.

Something very bad has happened in my aide’s life. I think I know what it is. I pray it isn’t. That’s way too hard to deal with. No flower can cover it.

Today I reassured her that I enjoy her company and like working with her. She smiled and said, I’ll see you tomorrow.

She doesn’t need nearly as much reassurance as I do.

I have a certified nurses aide with 30 years experience. I actually have quality care.

She’s African American, my age. We mesh well. We are polar opposites. My goodness she’s unorganized. Her car is so unorganized it makes me suicidal! I’ve never in my life… oh the chaos. The odd couple. But it works and it works well. I’m grateful for that.

I have prayed that I will learn a little more about humility * each time * I visit with my young Bible student or my CNA . Six days a week I’ve got an opportunity to mold myself into a better me by seeing my CNA.

I will style myself to be more gentle, slower with the heavy sarcasm, listen more, ask deeper questions, pause before I speak. I’ve got six opportunities where I can learn new skills.

My CNA may be professionally unorganized but she’s got humility down pat. There is much I intend to learn by her her. I won’t waste this opportunity.

Faith