Category: (CRSD) Reflex Sympathetic Dystrophy

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

Sewing with a machine as an amputee

Posted on by Faith

I sat down to hand sew dolls but my hands cramped and spasmed terribly. I thought I’d try to see if I could use my sewing machine despite half a foot amputated and despite significant nerve damage. I had my CNA bring it to the table but I didn’t try anything until after she left because I didn’t want to embarrass myself if I couldn’t properly feel and safely control the pedal.

There was all kinds of anxiety because I worried I’d press the pedal at the wrong time and sew my hand or something. Anxiety was high but so was my drive to find out if I could do it and save myself some pain while making dolls.

When I turned it on I acclimated myself to how the pedal felt under my foot. I got my brain to recognize the new sensation without automatically recoiling. After a few minutes I pushed the pedal with the machine turned off. I got used to that and got brave enough to turn it on.

I’m so happy I tried. I’ve used the machine several times now and what I discovered is that the nerve damage affects sewing ability. Sometimes the stump hurts too much to add any pressure at all or I can’t feel or control the stump enough to press the pedal. Those issues prevent me from regularly using the machine, but when I can I will use it to my advantage.

It’s been a week since I’ve used the sewing machine but when I was able I sewed the hands and legs for six dolls.

My hands want to give me trouble and my feet are a mess but between the two I am able to offer up dolls I’m proud of. They’re now about 25% sewn by machine but 100% homemade. I still hand paint the flesh tone, put it all together by hand and hand stitch in the hair. I still hand draw and hand paint the faces. The only thing that has changed is using the machine to create the arms and legs. Later down the road I may use the machine to help make the doll’s dress. We’ll have to see where my confidence leads me.

As mentioned in my last entry, I’ve started making bears again. I’m not using the machine with these which means it’s taking longer to finish them. I will post my finished products as soon as possible.

Until soon….

Faith

Enduring the Days

Posted on by Faith

Snapshot fma
Snapshot

The last few days have been torture. I hurt from the top of my head to the soles of my feet. The amputation site is having an electric storm of shock and neuropathy. It’s been a bad few days and I’ve done very little reaching out. I’ve just been waiting for medication time!

The foot that was amputated coincidentally was the foot with Chronic Reflex Sympathetic Dystrophy. Though amputated for other reasons, I hoped the RSD fire and pain would stop, it didn’t and won’t. It doesn’t work that way. Continue reading “Enduring the Days”