Joyce 🐝 Bowen Brand Ambassador @ beBee

6 years ago · 2 min. reading time · ~10 ·

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My Journey with Autoimmune Disease

My Journey with Autoimmune Disease

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I woke up this morning, and my right hand was completely dead. I mean like this dead tumor hanging off the end of my arm. Like a skin tag. No feeling—no sensation—and my mind was screaming something about writing. How am I going to write?  The only way I could tell that I had my right hand is I could see it.

I looked at my hand and willed it to move. There was nothing at first; then after what seemed to be many long moments--movement. I still have not breathed a sigh of relief. I can only think of what’s to come. My right hand is dying. This movement is a fleeting respite. In what will seem like a split second, it will simply stop responding to my commands to operate.

I’ve lost my legs twice. The best description I could come to is it was like air between my hips and the floor. I mean, like, nothing there. So my torso was hanging in the air. Gravity took over and CRASH; I met the floor in a terrible fashion. That had happened four times before I ground to the conclusion I had to lie in bed and not stand. So I suppose you could say I’ve lost my legs five times. It’s just that I count that one episode with it’s four terrifying crashes in one day as once. That was in 2012. I lost my legs again at the beginning of this year. Each time I drove myself to walk again. Autoimmune Disease relented and allowed me movement. But she’s a beast and doesn’t have to do so.
Each time my legs have come back to life, they’ve been worse. I am this side of a wheelchair. But I push to walk. I don’t want to give it up. Walking, I mean. Any distance is hard. You probably look down a long hallway and don’t even blink. I feel trepidation. Getting from point A to point B is a conundrum. Will I make it without hitting the floor?

My hitting the floor bothers the able-bodied more than it bothers me. People believe people don’t belong on the floor. Think about it. You’re walking along, and you see a living, breathing person prostrate on the floor. Horrors. I feel I have to comfort people. I tell them, The floor and I are friends.

I am between Neurologists, so I called my primary care physician. I was crying.  She said a magic word—FLARE. MS can flare up and die down. In my extreme panic, the word didn’t even light up inside my mind. Hope trickled in.

But the truth of the matter is: if this morning was not the end of my right hand, it is the beginning of the end. It has happened. My hand became a lump of bone and flesh protruding from the end of my arm. It will do so again. And some day it will do so forever.

Dying is difficult, and I am doing it a piece at a time.  It is a lonely journey.


 

Copyright 2017 Joyce Bowen

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About the Author:  Joyce Bowen is a freelance writer and public speaker.  Inquiries can be made at crwriter@comcast.net
Sobre el autor: Joyce Bowen es un escritor independiente y orador público. Las consultas pueden hacerse en crwriter@comcast.net

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Comments

🐝 Fatima G. Williams

6 years ago #31

#39
My prayer's and support for you Aaron
#39
I am honored. Thank you.
#34
See--knowing what I know can be retraumatizing. My thought process translates such things into children being put at risk--a most horrendous thing if you ask me. Considering such things is what I think I should avoid in order to better manage my disease. But you might just as well ask me to stop breathing.
See--knowing what I know can be retraumatizing. My thought process translates such things into children being put at risk--a most horrendous thing if you ask me. Considering such things is what I think I should avoid in order to better manage my disease. But you might just as well ask me to stop breathing.
#34
Of course, the institution is bucking the assertion of allegations into records. No wonder. But the threat of my going public has changed their tune a bit.
#34
There is only one state that has abolished the Statute of Limitations for such abuses. I forget which. Massachusetts--where I live--changed the Statute of Limitations to 35 years. So from here on in, professionals (or anyone, for that matter) should be able to be prosecuted in this state. Mandatory Reporting Laws across the US are being diluted with "frivolous" reporting clauses. In Massachusetts, Mandatory Reporting Laws are currently under consideration for changes. Under current law, if the person has reached the age of majority, the abuse does not need to be reported. But predators do not stop predating, so it is hoped that all abuses that occurred against anyone as a child must be reported if the law is changed. This was my dilemma. I reported for a second time when I was about 29. So it wasn't reported. Records were whitewashed. Allegations were not recorded in any way. To my way of thinking, this was unethical. I'm in the process of having those allegations inputted into my records.

🐝 Fatima G. Williams

6 years ago #25

#32
A priest once tried to abuse me. He was for sure scared because I was a smart one big mouth. I told him I tell my mom and my favourite teacher everything I do. He said he'd give me pocket money when ever I needed and he would do a physical examination of me. I was not ill and I told him what for brother ? I dont need any money and walked away. Later I told this to my teacher who told me never to meet him alone again but she was too shy to explain what abuse was I guess! So I always took 2 or 3 friends with me when we had to meet him for our catechism class work. She had advised me not to tell anyone or my mother all this and I haven't till date. So thats how these black sheeps escape. I think I knew what abuse was only after I finished college. They never told about all this stuff when I was in school. Such a closed shell we lived in.
#31
Complex trauma holds the following categories--severe child abuse, concentration camp survivors, and prisoners of war. Childhood sexual abuse can be viewed as complex trauma in some cases. Trauma is an injury, which, I am thinking, is why professionals are having such a hard time classifying it in the Diagnostic and Statistical Manuel (DSM). Professionals find it hard to admit the brain can be "injured" by events. I believe if you feel that an event has caused injury you can consider it traumatic. An example of my complex trauma is here: https://www.bebee.com/producer/@joyce-bowen/my-story-of-abuse
#30
Oh yes--I am rehashing my book. And--you'll love this--the Catholic Church was involved.

🐝 Fatima G. Williams

6 years ago #22

#29
You should write about trauma and what classifies as trauma. Honestly I think i know I've experienced trauma never realising it as one. What are the thing's one should consider as trauma?

🐝 Fatima G. Williams

6 years ago #21

#29
I do hope you have a book written about all this stuff to publish and make known to this world all these decievers. I will market your book for free. People need to accept and react to such people. Even now this is happening. Priest's who are supposed to protect are pouncing on young children. I think the solution to that would have the priests castrate themselves on their coronation. God forgive me if I’m wrong but thats how angry I am when I read about them abusing children.
#25
Thank you for your Tweets, Fatima. Hopefully, I will get some of this stuff resolved. I was raked over the coals by so many due to my investigations, and the pathology of some of them is severe, so I will not even attempt some. But I can restore some of my reputation. Those who suffer complex trauma often go on to suffer what is called institutional trauma. It is fascinating to see all this stuff from the inside, but disturbing to have to unravel it for myself and others. Myself primarily.

🐝 Fatima G. Williams

6 years ago #19

#27
You get bored Lol your a treat Joyce. Everything you say in your post pretty much happens everywhere in the world. If we report the ones who deceive us who are celebrated by everyone we become pirates I suppose. A never ending topic and a never solving issue I should say. Like imagine the way medical check up were introduced just so they can suck more blood and money from the people.
#25
But the strength? I have no choice in the matter. Thank you for your comment. I do realize I could just give up and got to bed and did so for about a year. It's taking too damn long for my body to give out, so I got bored and here I am.
#25
If you read Ian Weinberg's stuff on neuroscience, he mentions in comments (I think or perhaps on one of my pieces on MS) that this disease can be caused by trauma. I am currently trying to relieve the sources of trauma I can. I have records loosely affiliated to https://www.bebee.com/producer/@joyce-bowen/deception that I am trying to have amended. It's a source of anger for me, and anger is not a good thing. I spoke to a woman yesterday. The policy is to allow the professional to deny the amendment, but I am accusing the professional of wrongdoing, so what gives? I told her I would simply upload the records to google+ with my statement of allegations and refer any of my current professionals to that site. She begged for time, so I'm giving her a few weeks.

🐝 Fatima G. Williams

6 years ago #16

Joyce \ud83d\udc1d Bowen Brand Ambassador @ beBee Your strength to fight through this amazing. I don't know from where you get the strength to carry on but I admire you and I wish to have the same courage and confidence if something should befall me. Your biggest weapon is you release/exform all that happens to you through words which is good for you in a way your telling your body that your will power is greater than what it's trying to do to you and I salute you for that. Sending you all the healing from the universe with love and hugs. I wish there's cure for every darn disease in the world or may be there is and we are deprived of it.
#23
Remember--everything has a cost. We live in a society that requires you have money to survive. If I could, I would look into stem cell research. But hey. That's just the way it is. I was trying to find out about wheelchairs today, never mind voice to text. But thanks for the thought.
#21
I do have a hard time asking for help, Todd. But you'll be happy to know some people in my life are scrambling to help me, and I'm grateful--to you, too, Todd.
#18
I have lesions on my spinal cord. My disease is advancing fast. If you read https://www.bebee.com/producer/@joyce-bowen/my-story-of-abuse. Then you know I suffered Complex Trauma. That was followed up by Institutional Trauma. I am Sarah in here. https://www.bebee.com/producer/@joyce-bowen/sarah-s-story That was followed up by years of this https://www.bebee.com/producer/@joyce-bowen/deception In which I helped many victims. Predation and MandatoryReporting help me remember Tina and John. It's been a long life.
#15
Yea--I have that, but the MS impacts my speech. And remember--you still have to work the keyboard with Dragon
thank you, Karlie Rawnsley for his shares, Twitters, and LI interactions, too.
#9
Thank you, Debasish
#6
Thank you, Milos.
#8
studied the disease relentlessly back in the 70s, but wanted to go into cancer research back then so dropped it. I'm appalled at the progress that has not been made. (By the way--always believed cancer would be cured through the immune system--still do)

Ian Weinberg

6 years ago #7

Nasty disease Joyce \ud83d\udc1d Bowen Brand Ambassador @ beBee and we're powerless right now to do anything about it. That's been my greatest frustration and disappointment in neuro - to watch helplessly as neurological function wanes. Best wishes Joyce.

Bill Stankiewicz

6 years ago #6

Great

Milos Djukic

6 years ago #5

cc. Javier \ud83d\udc1d beBee.

Milos Djukic

6 years ago #4

#4
Words are powerful, yours, mine and ours. Cheers!
#3
I did slowly move past the loss of my dominant hand and try to work out ways to use the hand I'd have left. But the bigger picture looms large and I consistently will lose pieces of myself over time. My medical care is not impressive. Hasn't been for a very long time, but it is my hope and perception that it is getting better.
#1
Words are never useless. I think that's why I will miss them so...

Pascal Derrien

6 years ago #1

Don't have anything to say that can match your experience sometimes words are useless even though I felt every single word of this article

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