Showing posts with label gbs awareness month. Show all posts
Showing posts with label gbs awareness month. Show all posts
Sunday, June 3, 2018
Sunday, May 27, 2018
9 years ago on May 27th
9 years ago on May 27th - The other day I went to read a few of my Deadpool comics. Tucked inside one was this note that my mother dated. My husband would read the comics to me sometimes during the initial bout with GBS. I knew the storyline and knew the graphics so the dialogue and all just guided me through the story as he read. Anyway, the note was from during my upswing. I don’t know exactly what the date was when they removed the respirator, but it must have been a day or two after this. I honestly don’t remember much during that pocket of time. They had me pretty drugged up and just kind of woke me up for a little while while family was there and then let me sleep. It says: When u talk t drs give them hell I want these tubes out! :) Wed. May 27 2:30
Saturday, May 26, 2018
9 years ago on May 26th
So I missed a few days for my flashback diary post things...
After May 19, 2009, my health continued to decline and I watched the paralysis take over my body.
I remember the chicken broth that tasted like ramen, I remember my sister joking with me about sounding drunk as I slurred my words increasingly worse, I remember when swallowing became too hard.
I was eventually given the IVIG treatment.
I remember the feeding tube being laced down my throat, I remember being wheeled in for the respirator tube, I remember waking up with my hands cuffed to the side of the bed to keep me from pulling tubes out (not that my arms had the strength or my hands the dexterity to do anything.)
I could still somewhat hold a pen and whoever was with me would move the pad of paper under my hand as I wrote down letters.
I remember the morphine, I remember sitting on a hill staring at the starry night sky in incredible peace with a figure next to me, I remember scribbling out a message to my father that he quickly pushed away.
‘How long have I been like this? I feel I am not afraid to die.’
I remember hearing the doctor talking, ‘If she doesn’t turn around soon we will need to put her on a vent,’ I remember finding a moment of stillness in me as I listened to my heart beat, and I remember screaming at my body ‘You’ve rested enough, it is time to FIGHT!’
I guess that is when my body started on the upswing.
It took about three weeks from onset for my body to turn which is about typical (if there is any semblance of typical with GBS...) I bounced around between ICU a bit but finally around May 26th is when I was on more stable ground again.
The photo is a collection of some of the notes I wrote with the help of people moving the pages for me.
After May 19, 2009, my health continued to decline and I watched the paralysis take over my body.
I remember the chicken broth that tasted like ramen, I remember my sister joking with me about sounding drunk as I slurred my words increasingly worse, I remember when swallowing became too hard.
I was eventually given the IVIG treatment.
I remember the feeding tube being laced down my throat, I remember being wheeled in for the respirator tube, I remember waking up with my hands cuffed to the side of the bed to keep me from pulling tubes out (not that my arms had the strength or my hands the dexterity to do anything.)
I could still somewhat hold a pen and whoever was with me would move the pad of paper under my hand as I wrote down letters.
I remember the morphine, I remember sitting on a hill staring at the starry night sky in incredible peace with a figure next to me, I remember scribbling out a message to my father that he quickly pushed away.
‘How long have I been like this? I feel I am not afraid to die.’
I remember hearing the doctor talking, ‘If she doesn’t turn around soon we will need to put her on a vent,’ I remember finding a moment of stillness in me as I listened to my heart beat, and I remember screaming at my body ‘You’ve rested enough, it is time to FIGHT!’
I guess that is when my body started on the upswing.
It took about three weeks from onset for my body to turn which is about typical (if there is any semblance of typical with GBS...) I bounced around between ICU a bit but finally around May 26th is when I was on more stable ground again.
The photo is a collection of some of the notes I wrote with the help of people moving the pages for me.
Saturday, May 19, 2018
9 years ago in May 19th
9 years ago in May 19th, I spent the day resting and waiting for results from the doctors.
That evening I was so tired I needed my husband to help me take a shower. I headed to bed and again, I woke up feeling like someone was sitting on my chest. I moved to get out of bed and my legs gave out and I landed on my knees. I tried to lift myself with my arms, tried to get my legs to lift me. I yelled at my husband to wake up. He came to my side and finally I was able to lift up and lean against the bed.
We decided there was no more waiting for results from doctors and I needed to be at the ER now. He helped me get dressed and helped me shuffle out to the car. Sitting in the car was easy, lifting out of the car was a little more challenging. Once we got to the hospital he helped me out of the car and I was able to make it to one of the concrete posts. I couldn’t go any further and I needed him to grab a wheelchair. It didn’t take long for them to get me to a bed; I had time to text my parents and they had a chance to text a friend. While I received a breathing treatment for what I thought was an asthma attack, I could no longer lift my legs onto the bed myself. While the doctors were going over things, I got a text from my parents telling me that their friend said to ask about Guillain Barre. Sure enough, when the doctors came back, they agreed that was a direction to look into.
Step back to the start of May~
May 2nd, on Free Comic Book Day 🙂, Adam and I had gone to go see Wolverine in theaters and then stopped by a local comic shop. It wasn’t long before I was feeling sick and we headed home. The next few days I was pretty bad off with a stomach virus, trying to get better as soon as possible so I would be ok to go to Hawaii on the 8th.
Guillain Barre can be set off by a stomach and respiratory viruses, flu, food poisoning (from chicken) and even certain vaccines. Basically these things trigger and trick your body into attacking your nerves. But it takes a bit of time to show, in my case it took around 2 weeks to show signs and 3 weeks to really hit me hard.
Back to that late night in the hospital, through various scans and a lumbar puncture that showed elevated proteins, it was confirmed it was Guillain Barre. Good thing about GBS and my lumbar puncture, by that time I was numb and couldn’t feel it. :3
Now it was down to a waiting game.
A few bits to be added for that following week over the next few days~
That evening I was so tired I needed my husband to help me take a shower. I headed to bed and again, I woke up feeling like someone was sitting on my chest. I moved to get out of bed and my legs gave out and I landed on my knees. I tried to lift myself with my arms, tried to get my legs to lift me. I yelled at my husband to wake up. He came to my side and finally I was able to lift up and lean against the bed.
We decided there was no more waiting for results from doctors and I needed to be at the ER now. He helped me get dressed and helped me shuffle out to the car. Sitting in the car was easy, lifting out of the car was a little more challenging. Once we got to the hospital he helped me out of the car and I was able to make it to one of the concrete posts. I couldn’t go any further and I needed him to grab a wheelchair. It didn’t take long for them to get me to a bed; I had time to text my parents and they had a chance to text a friend. While I received a breathing treatment for what I thought was an asthma attack, I could no longer lift my legs onto the bed myself. While the doctors were going over things, I got a text from my parents telling me that their friend said to ask about Guillain Barre. Sure enough, when the doctors came back, they agreed that was a direction to look into.
Step back to the start of May~
May 2nd, on Free Comic Book Day 🙂, Adam and I had gone to go see Wolverine in theaters and then stopped by a local comic shop. It wasn’t long before I was feeling sick and we headed home. The next few days I was pretty bad off with a stomach virus, trying to get better as soon as possible so I would be ok to go to Hawaii on the 8th.
Guillain Barre can be set off by a stomach and respiratory viruses, flu, food poisoning (from chicken) and even certain vaccines. Basically these things trigger and trick your body into attacking your nerves. But it takes a bit of time to show, in my case it took around 2 weeks to show signs and 3 weeks to really hit me hard.
Back to that late night in the hospital, through various scans and a lumbar puncture that showed elevated proteins, it was confirmed it was Guillain Barre. Good thing about GBS and my lumbar puncture, by that time I was numb and couldn’t feel it. :3
Now it was down to a waiting game.
A few bits to be added for that following week over the next few days~
Sunday, April 30, 2017
May is GBS/CIDP Awareness Month!
May is GBS/CIDP Awareness Month!
Please feel free to use these cover photos on FB to help spread awareness!
GBS Blurb to include with your photo:
Guillain-Barre (gee-YAH-buh-RAY) syndrome is a rare disorder in which your body's immune system attacks your nerves. Weakness and tingling in your extremities are usually the first symptoms.
These sensations can quickly spread, eventually paralyzing your whole body. In its most severe form Guillain-Barre syndrome is a medical emergency. Most people with the condition must be hospitalized to receive treatment.
The exact cause of Guillain-Barre syndrome is unknown. But it is often preceded by an infectious illness such as a respiratory infection or the stomach flu.
There's no known cure for Guillain-Barre syndrome, but several treatments can ease symptoms and reduce the duration of the illness. Most people recover from Guillain-Barre syndrome, though some may experience lingering effects from it, such as weakness, numbness or fatigue.
Get involved and find more information online at https://www.gbs-cidp.org/.
CIDP Blurb to include with your photo:
Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder -- a condition that targets your body’s nerves.
Symptoms aren’t the same for everyone, but you may be tired and have areas of numbness and pain. It can slow your reflexes and make your arms and legs feel weak. You have to have symptoms for at least 8 weeks for CIDP to be considered the cause.
Most people need treatment. And the sooner you begin it, the better the chance of a complete recovery. Sometimes symptoms go away for a long time but come back later.
Anyone can get CIDP, but it’s most common in older adults, and more in men than women. As many as 40,000 people in the U.S. may have the condition, but it’s hard to know how many people have it. CIDP isn’t easy to diagnose.
Get involved and find more information online at https://www.gbs-cidp.org/.
Thursday, April 28, 2016
2016 FACEBOOK BANNERS
Show your pride and support towards GBS & CIDP Survivors and Fighters!
Please don't hesitate to use these and help spread the word and awareness about GBS & CIDP!
This year I also had a chance to make a few FB Profile Icons:
Please don't hesitate to use these and help spread the word and awareness about GBS & CIDP!
This year I also had a chance to make a few FB Profile Icons:
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