Category: Chronic Pain

It’s Just a Foot

Posted on by Faith

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

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

Pushing over the edge. Next step.

Posted on by Faith

It’s a difficult time right now. Stress is high enough that my body is killing me. Stress is high enough that I’ve trusted too much due to mental exhaustion.

I went running from the building bc I thought it was going to blow up. I thought God sent me a message telling me to get up and leave everything behind and flee. So I did. Only trouble was, it was late, late like 3 or 4 am.

I was rolling down the dark street away from the building bc I thought it was going to blow up but then in my head this line of reasoning came over me: If you trust Jehovah then you know he wouldn’t put you in danger. Go home. It was then I saw the guy bounce from the bushes towards me. I took off in my wheelchair screaming, trying to drive straight. I got to the porch and called “my brother” who is as exhausted and I.

never before have I thought I had a premonition so strong or felt it was from God. It was a strange thing. It’s never happened before.

I have talked until I’m blue in the face. It’s like a huge puzzle and I hate puzzles.

I don’t know what the next step is. I have hope though and that’s what I’ll keep in mind.

– Sundrip –

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

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

A History of Eyes on Me

Posted on by Faith

Content: Abuse. Being watched by abusers. Sadism.

Publishing this art piece comes at an odd time seeing as how I just talked about store workers profiling and following me and my caregiver at the store. It’s also not concerning imaginary audience / fable but an all together different type of being watched.

I was never sure why my mother was watching me. I was more concerned by her method of watching me. Although I know she watched me and my sister around the second grade, my most vivid memories are the 4th grade when she wore her trench coat and stood behind the door motionlessly.

The coat was her regular coat. It was a black trench coat. When the lights were out we couldn’t see her, nor were we looking for her. But if we saw a motionless figure in the hallway it scared the crap out of us. She’d make sure we’d seen her before walking away. No words. Just walks away.

After a little while I worked hard not to show I was afraid. I’d either say nothing or turn around to the door and say something to her. I had to guage how far I could go in pretending she didn’t scare me. I knew there was a response she was looking for. If I withheld that response too much, I might regret it. When being beaten with a dowel rod I knew I had to give the response she was looking for.

"She speaks the dream" - available

When being watched in the room alone, when showering or using the restroom there was a response she was looking for. I always wondered if there were times she wasn’t trying to get caught and see my reaction. This game of watching went on all the way to the day before I moved out. She listened to phone calls when we had a corded phone. I owned nothing, especially my body.

When I moved to Florida with my mother’s sister, my cousin and an uncle by marriage, I thought life was going to be good. He said he would treat me like his own daughter. That one sentence makes me want to break into tears. The irony of it is cruel.

Roses for Jane - available

My cousin was his step daughter. She endured more abuse than me. Having me dress up. Making crude comments. Watching me. If I turned around and saw him watching through the cracked door, he too would stay just a few seconds longer before quietly leaving.

I’ll be keeping A History of Eyes on Me a little while longer. It’s hanging in my own art area beside the painting She Speaks the Dream, which was created in 2017.

Observations – The painting called Roses for Jane was remade. In addition to more eyes, I brought out the figure in the back then made a dramatic leap by dividing the main figure in black and white. I kept quite a bit of the original twist and turns while softening her face by one notch. As a person who uses sunflowers for emotional expressions, it interests me that not a single flower is on the original piece or the new. The main figure is no longer standing in the dark.

Thank you for coming to Sundrip today.

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