Out with the Hospital, in with the Clinic

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

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

Teeth. Punishment. OCD.

I don’t deserve pretty dentures after the way I treated my natural teeth, that’s the way I thought anyway. So when it came time to choose the color of my dentures I didn’t want to choose a pretty white. I was going to choose a coffee drinker white, or a color warranted by someone with obsessive compulsive disorder who could no longer brush her teeth because of issues. So when the dentist asked about color and showed me examples I said I didn’t know. She automatically picked a beautiful color. In shock I said, “Really. I can have that?”

It’s been 8 months since I had teeth. I eat without difficulty, but I didn’t look like myself. My self-esteem tanked. I didn’t know it could go lower, but it has.

I cried when I put in the new dentures today. I couldn’t believe that I look like me again. My lips were full again. And I just naturally smiled again! I couldn’t believe how different I felt about myself by putting in a very pretty pair of teeth that I didn’t even feel I deserved. Yes, I gave them back, but in three weeks time I’ll pick up my first pair of hand crafted dentures with my name in them.

I got the idea to ask for my name in them because a woman who was killed on Forensic Files was helped to be identified by the name in her dentures. No lie.

Soon I’ll start the YouTube classes for speech therapy with dentures.

I’m excited. Best of all, I’ll have my dentures before time to go on my trip.

Happy Faith 🙂

Better Boundaries This Time Around

You know what? I did better with boundaries and setting limits than I first remembered. I originally looked back at the year with the old CNA and saw how many times I drew the line.

The first thing was how she would shoo me away with the back of her hand. She’d say, “Go! ” and begin to shoo me out of the kitchen area or restroom area, wherever I was. It felt horrible. I asked her to stop but she told me I couldn’t tell her what to do with her hands. I said, when it makes me feel “that way” I absolutely can. I ended up needing to call the supervisor about it.

She began saying very racist things about two different races. It was crazy. I said, how soon you forget the very words used against you. “They’re taking over.” “They’re taking our jobs.” “They’re dirty.” How soon you forget!!

She talked about how she doesn’t eat food from certain people because she feels blacks cleaner than their race. I get tired of that mess!!

It’s insane to inflict on others what we have to endure. When I talked to the supervisor about racial slurs she was mad. Shouldn’t have kept saying it. Hatred has no place in my home! I won’t stand for it.

She told me I can’t tell her what she can say. My answer surprised her. I said. I absolutely can. I can. I did. If vitriol comes out of your mouth you will hear about it. You say horrible things sometimes!

So, thinking back, I didn’t let her run all over me. I tried very hard to keep boundaries with someone who became uninterested in civility.

While there were really good times we had many difficulties, mainly with her mouth. You know what though? It was the mouth of one CNA. I only had one person’s behavior to deal with. I didn’t have CNAs cycling in and out which made the situation manageable, for awhile.

Let me address her walking out on me. That hurt. It also hurt to find out she actually put in a 2 weeks notice and that would have been her last day anyway. She put in a 2 week notice (unknown to me) because I had to report her language. I kept asking her to stop dropping the F-bomb. Why do I need to keep asking? Why are you using that word at work, especially that much? She actually quit bc she didn’t appreciate being asked not to use that word between the hours of 10-3, three days a week.

I guess she couldn’t bring herself to be respectful to others or to love herself enough to not say hateful, racist things about others.

Early on she used to tell me she was going to leave and not come back. I asked her to stop. I don’t think it’s funny. She kept saying it so I told the supervisor. So now she’s gone. I’ve got mixed feelings.

I honestly liked her in the beginning. I still have empathy and sympathy, now with anger.

Faith

A Gentle Youngen. Updated.

My new CNA is a gentle youngen with a strained home life. I like her. She likes my cat despite being black lol. Joe screamed at her the whole day though, trying to get her attention. He really wants her attention. I had to threaten him with the spray bottle to leave the poor, not even legal, woman alone. She’ll be 21 in July.

Today we started off with breakfast with no difficulties. She helped me bring my stuff to the table and I made sausage and pancakes.

I was greatly fatigued so we didn’t do much but get to know each other and eat a bite. I’ll have her Monday thru Friday then I’ll have Saturday care.

I appreciate having an aide who likes nature. The other constantly said she hates nature. I knew we weren’t going to the park to walk around. No nature sight seeing. Perhaps with the new girl I’ll get outside in nature a little more.

Despite tthe other CNA ending badly, I can’t bring myself to be angry with her. She was so very wrong these last few weeks, definitely. But man I really started to care about her. We talked on a deep level quite often. She’s a good listener, asks questions. I have no idea why she tore down our little working relationship. I’ll get over it. It’s so complicated when one of us has raging Borderline Personality Disorder and they’re responsible for the care of a person who can be very vulnerable. Her behavior is so BPD. I know why. It doesn’t make it better to deal with. The complicated emotions I have are in knots.

Update 4-24-2024

She’s 20 years old. She told me today that older people usually like her because she knows how “to stay in a child’s place.” A lot of people want to come and change things to their way of doing it but she was making the point that she will not do that. But it struck me how she put it. And she apologizes so much. Said her mom is unpredictable, rageful, out of control. She has a baby sister. My new CNA apologizes a lot and wants to get everything right. My heart kind of hurts for her. So far things have been going very well. I look forward to seeing her each morning.

Me

Eating Disorder Clinic. Outpatient Care Only.

Today I started care at the eating disorder clinic for abstinence and binge eating. I didn’t feel judged at all. I didn’t feel like my size disgusted them.

I know not eating for 3 days is a problem but I didn’t realize it would be something to try to make me go inpatient for care. I said no. I’ve got too many issues. I’m better off here. Outpatient or half day care where I sleep here is fine. But I can’t go inpatient. I won’t tolerate it well.

We discussed my hatred for water except for what lives in it. I told him that when it gets on me at all I panic. It feels as if I’ll die. Like I’ll melt into a puddle of soup.

The OCD is significantly better in that it’s not ruining my life. The eating disorder is ruining my life.

Next month I see my Oncologist / Hematologist at a different clinic. I didn’t want to go to the hospital for care anymore so I’ll go to an outpatient clinic for treatment for blood clots associated with Lupus.

I can’t say enough how refreshing it is to have a good CNA! She’s been here a year. I hope she stays. 🙂

My July trip is getting closer. I’m excited! I’m making a wrap skirt with headdress and matching earrings.

This thing is huge so I’m going to make a wrap skirt and all that from this material. In general I don’t wear yellow but I’m wearing yellow in honor of my best friend who loves yellow and can’t travel to the convention center.

I’m actively saving for both trips. I don’t think I’ve been this strapped for cash in a long time. My basic needs are met but dang. Broke sums it up!

Well, for the first time ever, I’m adding a video security system to my tiny home. It’s mostly for when I’m not here. I hate that I have to do this. The world has changed. I have not changed with it nor will I. But adjustments for safety is a reasonable step to finally take.

Here’s Joe Schmoe, just for fun. My green eyed monster with an irritated look. He’s camera shy.

Faith

OCD and Eating Disorders. Art.

Obsessive Compulsive Disorder and Eating Disorders occur together up to 40% of the time. My OCD and my eating disorder have gone untreated because there were other things that took first place like getting me emotionally stable so I could stay out of the psych ward, moving to stable housing, stabilizing dissociation and of course getting beyond the hospitalization in 2018. There’s always been something to push attention elsewhere.

Dr D and I have been discussing OCD regularly, and I’m still reading the OCD workbook. That’s going slowly because it’s very triggering. I discovered one of the most traumatic memories wasn’t my mother being abusive but having strong OCD symptoms for which she never sought help.

Every year when we went to Kentucky we crossed a bridge. While crossing we had to sit perfectly still for fear of triggering my mother, who said she’d drive over the edge. THAT is part of her OCD. At a reoccurring meeting, I worried I’d stand up and scream the F-word. THAT is the same kind of symptom from the disorder I inherited from her.

My mother and I share quite a few symptoms. We both need to see our belongings. I arrange and rearrange my apartment almost daily. It used to be daily. Now it’s once a week. The meds for OCD have helped me in many ways.

I keep quite a few art supplies out for two reasons; 1- easy to access 2- easy to see them, which brings me comfort.

Right now I’m having a difficult time with compulsive eating. There’s the obsessive thoughts followed by the compulsion. A box of 10 Twinkies was purchased the other day. Once the box is opened I’m compelled to eat the entire thing or risk something bad happening to me. I’m not sure what, but it happens with most packages of food. If I open it I’m compelled to eat the whole thing. I’ll eat during the day and night. I’ll wake up in the middle of the night until the item has been completely eaten. This means high calories that don’t get worked off like they used to. To make matters worse, three of my most vital medications has the side effect of increased appetite. I have that pulling on me and OCD associated eating.

There’s no strong emotion followed by binging. It’s obsessive thoughts followed by binging and compulsive eating. I don’t purge in any way though it has recently crossed my mind. I don’t want to gain more weight but I also don’t want to ever purge again, in any way.

I have to say, being in a wheelchair has increased pacing, rocking, counting and staying awake until I absolutely have to go to sleep. Then when I’m sleeping I don’t want to wake up. These may not all be OCD issues. I just recognize these behaviors in myself.

It can sometimes take

The book has really helpful information but as I said, it’s triggering because it brings back unwanted memories of my mother and her extreme behavior.

I’m unaware of aunts having OCD. As far as I know it’s in the immediate bloodline. It goes from my mother to my sister and me. It’s as disruptive in my life as dissociation.

Art

The woman feels very judged and misunderstood.

The 12×9 collage is on heavy paper and includes words and phrases cut out and strategically placed. It’s a work in progress. I’ve got to figure out what to do with the background. I started this piece today. I hope to finish it and one other piece very soon. The below piece is called The Deluge. The eating disorder piece is called Dignity.

Faith

Fear of Others Forgetting, Leaving, Criticizing.

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

What Keeps Me Awake – Fear of letting go

My mind will catch up with me if I turn over and go to sleep.

Grief will catch up with me if I allow my mind to slow down.

I’m afraid of the images that are so vivid even with my eyes closed so I watch worthless TV shows and listen to books I’ve heard more than the author has heard it himself.

I feel myself running. I’m afraid of being left. I hate hanging up the phone after therapy. I hate when my CNA leaves for the day. I feel alone in the world when people leave. It’s not that they are leaving to go home, it feels like they’re leaving me.

My face is different all the time.

I see my different selves in photos.

My appearance drastically changes as the day goes on.

It takes so much mental and physical energy to leave the house. When I return, I look swollen and tired. Seriously, these two photos were taken hours apart.

I often do not recognize myself in the mirror and that spooks me.

On days when this is happening I go in the restroom with the lights off, and keep my eyes down so I don’t catch the eyes of the person in the mirror.

I recently looked at more photos of my mother and her sisters. You can tell we share blood. I don’t mind clearly being from that family. Years ago I started getting ok in my head with having my mother’s hands. It feels like it should bother me to look so much like that family but it doesn’t. I suppose it would be another story if they were dog-butt ugly.

Art

I like to play with light on my face. I often want my face to be my art, expressing different emotions.

Photos after dental surgery (and with a filter) allowed me to show how my heart feels bruised and beaten by grief. It’s not just grief for -K-, it’s grief over the catastrophic consequences from the selfish choices my family routinely made when I was young. It’s grief over decisions I made as an adult trying to survive my past.

Sometimes these things feel as if they consume me.

*No worries. These photos are from past dental surgery. I’m 100% safe and healed, as seen in the recent photos at the top of the entry. *

I sold a few paintings.

I sold the little girl with the balloon

and the one about faith. The funds will go towards my trip at the end of June. I’m hoping to really fill my Etsy shop in hopes of making more money for my three day stay. I’ve also updated my Redbubble shop that offers prints and products of my art pieces.

It’s 2 in the morning. I have things to do tomorrow but being alone in the dark is hard.

My head is no better than when I started writing. Please, I need peace inside.

Joan

Father. Art.

I keep sighing. My heart is heavy but I keep trying to lift it up.

The fatigue is insane.

I’m learning so much about how OCD affects my life and how it affected my mother and sister.

I don’t know why I keep thinking about my father. I remember his voice was kind and sweet. I don’t want to be angry with my mother for separating us. It’s foolish to entertain what-if scenarios but what if one of my parents loved me.

I say my mother didn’t love but I’ve got to retract that statement. The more I learn about her mental health the more I think she had love for me from time to time but was unable to most of the time. There were many things I can point to now and see a shadow of normalcy where love could have existed. Somewhere in that shadow she may have been capable of loving me. Sometimes there may have been a spark.

I bet my mother battled depression after the divorce. I remember feeling like a failure after my marriage ended. Is that why she cried so often? Did she cry because of the divorce and the loneliness?

It’s hard to say she may have loved me while knowing the extremes she went to in order to hurt us.

She lied and told me my father was dead when he wasn’t. Now I wonder if what contact she had with him in my younger years.

Like all my other family photos, my father’s photo is tucked away so I can’t see it. There are no family photos on my walls at all, just art.

Our family of three left a restaurant together. While in the car my mother told me and my sister to “freeze, it’s an emergency, don’t move.” She said look straight ahead and don’t move. After about a minute or so she gave the all clear then said, “That was your father in the car next to us.” It was cruel.

I’m tired. I’ve got to sleep very shortly then get up and eat. The fatigue is heavy.

Original Art

This piece has changed significantly. It now reflects dissociation and PTSD. It’s currently listed in my Etsy shop.

This is more Chatter Art. It’s art that I do to better manage the incessant talking in my head. I’ll put this in the shop too. It’ll be in the section for journal art.

The above is complete and ready for the shop. It too is chatter art. It feels great to finish art pieces. You can see more in my Etsy shop. 🙂

I have a restart button hanging on the wall so if things really start to go down hill I can hit the button, take 5 minutes for breathing exercises then get back to life. I got the button from Dollar Tree.

Until soon,

Faith