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~
Friday, May 18, 2018
9 years ago on May 18th
9 years ago on May 18th, I went into work and I was stumbling progressively worse after having a great vacation in Hawaii the week before. I thought it could be exhaustion from the trip.
There were a few things that came up during our vacation including numbness in my mouth (thought I ate a dish I was allergic to that had a bunch of different seafood in it plus having a super cold snow cone usually numbs my mouth a bit...), my arms being exhausted and hard to lift above the shoulder from a really bad sunburn (or so I thought...), I broke my toe while out swimming (but yay! It didn’t hurt! *wiggles toe*) not to mention while we were out swimming the waves were really hard to swim against (TX must not get strong waves like this!), I was SUPER tired after hiking up Diamond Head (I thought I was in better shape! Time to work out more!!) and when it finally came time to go home I couldn’t even lift my bags into the car! (Is this jet lag? I’ve never had jet lag? Wtf is jet lag?) Once I got to my parent’s place getting upstairs to my room was hard (lol, I must really need to work out if my legs and everything is this tired after a little trip to Hawaii!)
I had a scheduled session with a doctor to look into PT for lower back pain. When they saw my disrupted gait and inability to balance they sent me across the street to my doctor to get orders for scans done. My regular doctor wasn’t at the office at the moment and when I asked the one there what was going on she just shook her head and said it could be a tumor.
I got in the car and called my boss and had a bit of a panic attack. I calmed down after a few minutes.
I then had the scariest drive home and honestly I should not have been on the road. It took all of my attention to focus on my feet moving between the brake and acceleration. I got home and was exhausted. My ankles felt like they were moving in sand.
My husband came home and drove me to the diagnostic office.
It probably took 10 minutes to walk from the car to the front door, I had to stop to catch my breath every 8 steps. My husband helped me get dressed in the gown for the scans because I was having issues with my arms being so tired. We did the scans and I got dressed. I lost a sock somewhere. Now we had to go home and wait.
In the middle of the night it felt like someone was sitting on my chest and I got up and stumbled around the living room until it felt like I could breathe better. I went back to bed after a little while.
I had the day off the next day and I used it to rest and wait to hear back from my doctors.
To be continued tomorrow~ :3
There were a few things that came up during our vacation including numbness in my mouth (thought I ate a dish I was allergic to that had a bunch of different seafood in it plus having a super cold snow cone usually numbs my mouth a bit...), my arms being exhausted and hard to lift above the shoulder from a really bad sunburn (or so I thought...), I broke my toe while out swimming (but yay! It didn’t hurt! *wiggles toe*) not to mention while we were out swimming the waves were really hard to swim against (TX must not get strong waves like this!), I was SUPER tired after hiking up Diamond Head (I thought I was in better shape! Time to work out more!!) and when it finally came time to go home I couldn’t even lift my bags into the car! (Is this jet lag? I’ve never had jet lag? Wtf is jet lag?) Once I got to my parent’s place getting upstairs to my room was hard (lol, I must really need to work out if my legs and everything is this tired after a little trip to Hawaii!)
I had a scheduled session with a doctor to look into PT for lower back pain. When they saw my disrupted gait and inability to balance they sent me across the street to my doctor to get orders for scans done. My regular doctor wasn’t at the office at the moment and when I asked the one there what was going on she just shook her head and said it could be a tumor.
I got in the car and called my boss and had a bit of a panic attack. I calmed down after a few minutes.
I then had the scariest drive home and honestly I should not have been on the road. It took all of my attention to focus on my feet moving between the brake and acceleration. I got home and was exhausted. My ankles felt like they were moving in sand.
My husband came home and drove me to the diagnostic office.
It probably took 10 minutes to walk from the car to the front door, I had to stop to catch my breath every 8 steps. My husband helped me get dressed in the gown for the scans because I was having issues with my arms being so tired. We did the scans and I got dressed. I lost a sock somewhere. Now we had to go home and wait.
In the middle of the night it felt like someone was sitting on my chest and I got up and stumbled around the living room until it felt like I could breathe better. I went back to bed after a little while.
I had the day off the next day and I used it to rest and wait to hear back from my doctors.
To be continued tomorrow~ :3
Wednesday, May 9, 2018
2018 Houston, TX GBS/CIDP Walk & Roll
Donating this set for Auction (or Raffle once they decide.) This includes a sea turtle sarong, necklace, anklet, and CIDP/GBS stickers. Are you going to be in the Houston area on May 19th? Stop by the 2018 GBS/CIDP Walk & Roll hosted at Brazos River Park - 18427 Southwest Fwy, Sugar Land, TX 77479 from 1pm-3pm. Help us meet our $20,000 goal!
💚💙💚💙 Why the sea turtles? Personally I see it as combining several things.
💚I was hit by GBS while in Hawaii.
💙GBS is sometimes referred to as Getting Better Slowly which reminds me of Slow and Steady in reference to a turtle.
💚 My recovery greatly increased once I was able to start water physical therapy.
💙 Sea turtles are also known to represent achievement through perseverance.
2018 Houston, TX GBS/CIDP Walk & Roll
Donating this necklace for Auction (or Raffle once they decide.) Are you going to be in the Houston area on May 19th? Stop by the 2018 GBS/CIDP Walk & Roll hosted at Brazos River Park - 18427 Southwest Fwy, Sugar Land, TX 77479 from 1pm-3pm. Help us meet our $20,000 goal!
💚💙💚💙 Why the sea turtle? Personally I see it as combining several things.
💚I was hit by GBS while in Hawaii.
💙GBS is sometimes referred to as Getting Better Slowly which reminds me of Slow and Steady in reference to a turtle.
💚 My recovery greatly increased once I was able to start water physical therapy.
💙 Sea turtles are also known to represent achievement through perseverance.
Wednesday, May 2, 2018
9 years ago on May 2nd
9 years ago on May 2nd I had a horrible stomach bug that had me chugging chicken broth and Gatorade like there was no tomorrow.
As my body began the fight to recover, this started something that was going to kick my ass in 2009. :x
As my body began the fight to recover, this started something that was going to kick my ass in 2009. :x
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