Tag: Amputee

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

Eating Disorder Clinic. Outpatient Care Only.

Posted on by Faith

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.

Posted on by Faith

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.

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

Life Today

Posted on by Faith

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.

Faith

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

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

You’re Strength Painting. Next Year’s Art Goals.

Posted on by Faith

It took a month instead of two weeks to complete the painting of sunflowers with the Scripture. When the painting was picked up she ordered one for herself. The other person who saw it ordered one. I’ll be doing them on paper. I seriously do not enjoy canvas.

One of my art goals for next year is to increase the amount of art that’s based on Scripture.

I also like the idea of painting my cat, but I’m pretty bad at animals. Maybe I’ll just keep photographing him.

Michael Joseph Austin aka Joe Schmoe, is going to be 15 next year. Honestly, it kind of scares me because I worry about losing him. It’s been 2 years since he had a stroke. His eyesight was affected, other than that he’s the same cat.

There are three goals for the next creative year 🙂

  • Scripture based art.
  • Painting cats in an outsider art kind of way.
  • Paint butterflies in outsider art kinda way.

I’ve joined a group about butterflies and have seen some absolutely amazing creations. I have to paint them! I’ve also got a book I was given by a good friend.

Those are my new year’s goals.

Gratitude List

  • I’m entirely moved by the varied designs, textures and vivid colors of butterflies.
  • Cookies. Above any other flavor, I love big sugar cookies with icing and sprinkles. A friend brings them sometimes.
  • I enjoy trying new things. My CNA and I laughed so hard at how bad bison steak is. So, so nasty! The texture and taste is a catastrophic collision that may have killed taste buds. Just wow lol. I’m grateful for the ability to laugh and still appreciate the experience due to the laughter, and I’m looking forward to trying other new things. 🙂

Faith