Category: Lupus

Paranoia, Fear, OCD and Art

Posted on by F.Magdalene

My caregivers take me in the community regularly. They assume their presence is enough to keep me calm and feeling safe and grounded. I’d say the statement is 75% true. My anxiety after being stalked has risen. It wasn’t a joke. It wasn’t a game. It was a lot longer than a year! And it was violent and intense! I’m happy to be safe now.

I’m not paranoid in my new home any more than I’ve ever been paranoid. I don’t think being stalked changed that level. I’m back to my old fears, obsessions and compulsions in the new place. Like always I’ve kicked into my coping skills.

Reality check – Can I validate my fears? Are they in the realm of possibility?

Grounding. Remind myself of who I am and that I’m safe. My name is XYZ. I’m X yrs old. I’m safe now! I have an friends, an apartment and most of all a future!

Stimulation / Distraction. It’s time to switch the channels. I have a small vile with me that has the tiniest little bit of lavender in it. It’s my on the run aromatherapy. I also carry a small scratch pad to sketch in because art works for me. Earthing, sitting by the fan or just going outside can help eleviate stress and get it back down to a manageable level.

I would not normally suggest using a tablet at the table in a restaurant but I do it regularly now. I’ve done it in line at Ross because the line was long. The new Five Bellow needs to open more registers but this entry isn’t about that LOL. I sketch at any time, any place in order to control the anxiety, especially if I’ve already tried lavender.

Usually by this time the CNA has picked up on my sketching and starts to ask questions. She kicks into CNA mode and we move to the side for just a bit.

There are times when I can catch my breath and we can proceed but other times I just want to go home. In the car my pen moves like crazy.

OCD Getting all my teeth pulled was the single best thing I could have done. The tooth brush was simply too much.

Bidet. Yeah, should have done this a long time ago, too. It’s difficult to use the restroom. Difficult to clean up especially if there are issues.

The disorder is not fun. I’m trying to manage. I see the new psychiatrist August. That feels like… is... forever.

Faith Magdalene

Belly

Posted on by F.Magdalene

Is there even a comfortable position for people with inflamed kidneys? I’ve not found it.

Because I am now predibedic, I’m going to ask my doctor for the DEXCOM system. I’m a 7 but it’s still a problem and we want it worked on.

Faith Magdalene

Lupus: Destruction. New Home

Posted on by F.Magdalene

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.

Posted on by F.Magdalene

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.

Validation. Symptoms. Wording.

Posted on by F.Magdalene

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 F.Magdalene

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 F.Magdalene

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 F.Magdalene

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 F.Magdalene

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 F.Magdalene

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