Category: Lupus

Validation. Symptoms. Wording.

Posted on by Faith

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

Face It: The Advocate

Posted on by Faith

Many years ago I painted with a computer program. I painted stroke by stroke instead of with filters, making each line very personal. I printed off postcard art and offered it under my name, Sundrip. It was many years and many experiences ago.

Recently I found a stack of the post cards in an old box and began doodling on them. The Advocate came about, so did the idea to continue to mark up, up cycle and alter my own art piece.

I’ve created a section in my shop called Face It. You’ll find just a few original postcards offered for a short time and the altered Face It pieces. The piece that’s in there now is called The Advocate. It’s different from the original in that the colors are deeper, the walls are fuller and if they could talk, they’d have a lot to say.

Here’s the original postcard art from 2007.

Introducing The Advocate in 2024

The Advocate

A figure stands on a purple platform looking down. Purple is used to advocate for domestic violence, Dementia / Alzheimers, Fibromyalgia, Lupus and other systemic illnesses. The platform symbolizes the person’s difficulties that he or she must face. Who will speak?

The postcard is original art by me but there will be many altered Face It Postcard Series pieces. Each will be a one of a kind.

Etsy is where you’ll find me 🙂

Faith

Out with the Hospital, in with the Clinic

Posted on by Faith

I made all my appointments at the hospital every six months since 2018 but it was time for a change. I’m seeing the same doctor just at a clinic associated with the hospital. I’m happy I made the change.

People spoke to each other in the clinic and it wasn’t about their fight, it was about the beauty red fox family in one yard, a family of bunnies in another yard and pet frogs at my house.

We talked about birds and insects. I talked about insects with two people I didn’t even know as well as the Merlin app that helps me identify what bird I can hear outside. Most of the time I can’t see it but I can hear it so I look it up and do a bit of reading on it. Anyway, it was nice talking to them.

How’s my body? The heat has my body flush. Using my own topical is more effective than voltaren cream. I can use mine just about anywhere and without a time limit. My vitals are in good shape. My weight loss medication appears to be working.

I was to go to intensive out patient eating disorder treatment for 8 weeks but I was unaware of the distance. I can do virtual therapy with them but not intensive outpatient in person for 8 weeks. The transfer and travel time would be brutal. I’ll talk to my pdoc about it. Also, I’ve not been that far from home on my own, in a wheelchair. I’m afraid.

I’ve yet to travel anywhere alone since being in this wheelchair. I was going to go two blocks down the street not 30 minutes one way. Also, I’ve read the reviews and I don’t need the shame. Instead of flat out no it’ll be “not right now with a heavy chance of no.” They need better reviews for me to put forth the type of effort I’ll need and to endure the physical pain I’ll endure while sitting up through the sessions and traveling.

Faith

Brief Medical Hospital Stay

Posted on by Faith

I’m home from a brief medical hospital stay but in the entry I’ve lead with emotional issues.

I have to admit I am emotionally excitable and I cry at the drop of a hat. Today I cried my eyes out concerning the CNA who left. I was crying because I hate being left. I hate the way she did it. She just walked out!

You know the company has lied (all the companies lie through their teeth up and down all the time). You mean to tell me they couldn’t find a lie this time so that her two weeks had advance notice? Lying is what they do. They couldn’t come up with something to make that transition easier instead of just boom she doesn’t work here anymore! and then for her to just walk in, I ask for breakfast she becomes irritated, says “don’t start with me. Today is not the day “ and walks out …….. it hurts deeply.

I’m so weepy today and I hate the fact that Mother’s Day is coming up cuz that’s all I’m seeing everywhere is Mother’s Day, Mother’s Day, Mother’s Day! I don’t even celebrate Mother’s Day but seeing it reminds me that my mother was mentally ill, cruel, unloving, and she left me too many times to count (saying it was my fault). My stomach hurts so badly. As heavy as that is, that isn’t why I was in the hospital.

I remembered something that will possibly help me move forward. This very materialistic, appearance conscious person, throws people away like candy wrappers. She can’t stand to be alone any length of time but if she can manipulate the support of others she’ll orchestrate an exit. The many exists she told me about we were while the person wasn’t home. It was planned behind their back. In other words, this is her MO. I’m just another piece of candy she got tired of and threw the wrapper on the ground. This is what she does.

It’s also hard knowing May 7th is the amputation anniversary date.

Hospital. I was in the hospital because of blood clots so painful I was writhing. My stomach turned violently but nothing came out. Violently! My complexion was off.

Of course they did every expensive test in the entire world and filled me with all sorts of stuff. But I come home with valuable information. I now have information that will help keep me out of the hospital so often. Sure wish I had it four months ago.

I was so exhausted when I came home that all I wanted to do was sleep. That did not happen. I had 5 necessary individuals to wait for, open the door and interact with before I could get some sleep. Coming home Friday was a long, long day.

Monday I’ll see my regular doctor. Wednesday I’ll see my Oncologist / Hematologist. I won’t get to talk to Dr D bc of medical appointments.

To keep me going I have the following:

  • Tears – They are cleansing. They are not a sign of weakness. They will help me expel toxins, relieve anxiety and stress.
  • I will have art – Get well cards for people at the Hall, my own artwork, doodling, any art
  • Letter writing – Nursing home individuals, others
  • Scripture, Prayer
  • Friends
  • Journaling – I have my written Journal, Gratitude Journal, Art Therapy Journal.

I will not abuse food or myself. My CNA will help me take all of my medications. She will help me to make sure I am doing all of my ADLs. And I’ll make it. It won’t be that long before I’m back on my feet emotionally and physically.

Thank you for reading.

Little Duck

Fear of Others Forgetting, Leaving, Criticizing.

Posted on by Faith

To most I don’t look nearly as unhealthy as I am. Will people move on and expect me to keep up bc they think I look like I can? Will people remember how bad it was physically and emotionally and have grace for me when I get messed up during anniversary times like May 7th?

I don’t think people get that just because it was 2018 that the raw fear hasn’t passed. I know my amputation is limited but it’s on top of everything else. The nerve damage is crazy. The nub is open again. Open but not infected. I’m requesting medical honey for it.

Without THC I hurt all day, every day. I’m trying to get used to being high in public.

I have nerve damage from the full mouth tooth extraction. It’s so painful I rock back and forth holding my mouth. It’s been what, 4 months since the dental surgery? Just like phantom pain in my foot, I have dental phantom pain.

I fear people will expect me to keep up in life. I don’t think I can. If I fall behind (or become mentally unwell) don’t want people to forget why then give up on me.

I’m not a slacker.

When I go to the store like today people ask why I’m in an electric chair. Old women find it OK to comment on how they see so many young people in the electric carts. They ask, what’s wrong with you that you need a cart? It’s not diabetes. It’s Lupus! Yes, different stages of Lupus can lead to kidney and vascular problems. Blood clots lead to amputation.

Days like today fluster me. I was flat out asked what’s wrong with me. I sit bc I have to. Life in a wheelchair is harder than walking. It hurts. I get pressure sores from sitting in the wheelchair. The muscles in the lower back begin to shorten and spasm. Carpal tunnel is a struggle. Life long constipation, etc, etc. Life in a wheelchair isn’t as healthy as walking.

Update – I have an active blood clot in my left hip. The right leg shows vascular issues. I’m not in jeopardy of losing it.

So, I guess it boils down to understanding. I want my friends to understand why I’m not ok sometimes. I don’t want to lose my help bc I appear healthy.

Lastly, I’d been saying I can’t survive anything else, especially an amputation, but I was wrong. I have a lot of fight left. It comes in waves. Sometimes my strength has to be mined like gold, but the payoff justifies the effort.

Joan

Divided

Posted on by Faith

Content – Dissociative Identity Disorder, Uncontrolled weight gain, CNA in public.

Dr. D hasn’t changed my diagnosis. He still recognizes the disorder. He wanted to know if I believe that ‘they’ are all me and not actually separate. I said, I know it’s impossible to have more than one person in my head, but I want you to understand that I’ve been doing the impossible for a very long time.

I told him that I used to think I wanted to be one person but now I’m not sure I could stand the silence. I get this image in my head of a single person standing in the middle of a black tunnel, alone. That’s how I view being one person. In the middle of a dark tunnel with very little air and a whole lot of silence.

While I’d love to have less noise in my head, I decidedly do not want to be just one person. I don’t want any new people either.

I shared with him that I felt very threatened by his questions and pressured by my insiders to speak up for them. They would have felt betrayed had I not stated that we’ve been doing the impossible for a long time, and they’re here.

I talked to him about how panicked I’ve been lately.

I’m having a hard time settling down enough to post art for sale in my shop. I’ve got six items but I can’t seem to get over there and post more. I don’t know why. So, I’m just letting myself paint as much as I need then when I’m able I’ll post more art for sale in my Etsy shop.

Me = I caught a glimpse of myself in the mirror today. I swear, pounds just pack on me no matter what I do. I feel so ugly.

I was supposed to go to the mall to roll around in my manual wheelchair but I’m afraid to go to the mall. I don’t want to get shot.

Could I somehow, some way get doctor’s clearance to go to Planet Fitness? Could I have CNA coverage and transportation? Am I a fool for even thinking it?

CNA = My psychopath CNA is going to get us killed with her rage, laying on the horn yelling at people. I don’t want to continue to intervene as if somehow I’m here social worker or therapist. I have to let her know that if her actions cause the police to be called, she can’t work for me any longer. I’m going to have to tell her that it’s not a joke, if someone calls the police bc you threw something or threatened someone, you don’t work here anymore.

I had a really nice Saturday person that cared for me. I hope she can return.

Why do I hate myself for having care? I don’t think everyone inside agrees with that statement.

Faith

At War With Myself – Disordered Eating

Posted on by Faith

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.

Joan

This week in photos: Stress. Pets. Art.

Posted on by Faith

Joe has finally won over the CNA. She likes him quite a bit. Joe doesn’t climb in the chair she usually sits in but he does rest under it now.

I’ve been doing more art with Scriptures and scriptural thoughts. This little 8×5-ish painting is for a good friend of mine in Arizona.

I’ve got to work on spacing out my lettering better.

Rosie is taking a bath in the 30 gallon, over grown, terrarium. Today on a group there was a free gecko. It took everything I had not to inquire. 🙂

I think as my buddy gets older I fear losing him.

I thought getting a younger cat now might make the inevitable, tolerable. But then there’s the possibility it’ll just stress Joe.

Joe is only 14 but that’s nothing to sneeze at …….. He’s been letting me pick him up and hold him a little longer, which is great for me. If I talk to him he’ll let me hold him longer but I find it difficult to chatter at pets.

I’m in love with my raw beads! I used brown Sculpy mixed with yellow FIMO that dries like leather. Just to put them in a safe spot, I slid them on a piece of leather. It looks pretty good. I put it on my vase holding my arrowhead plants.

Painting rocks and making beads is so relaxing.

Here are a few photos of me on ‘outing day’. Next week I’m going to CC’s Pizza. I’m getting out a lot more and loving it.

I’ve got company this weekend. It should be nice. Lol I feel like a bit of a social butterfly again.

Until soon,

Faith

Put Up or Shut Up

Posted on by Faith

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.

Joan

Freedom. Up Hill Battle.

Posted on by Faith

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.

Faith