Showing posts with label gbs awareness. Show all posts
Showing posts with label gbs awareness. 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~
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
Tuesday, May 23, 2017
Texas Steampunk Connection!
I had a chance to stop by and chat with the Texas Steampunk Connection for a bit! Take a listen!
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/.
Sunday, September 25, 2016
GBS CIDP Symposium - Brief Recap
Had a blast during this GBS CIDP Symposium.
TLDR: I might be helping out with online social networking outreach and teaching liaisons/directors how to effectively use networks for outreach. I met someone in Round Rock that might be giving the Ketamine Therapy a try. If you are a GBS/CIDP peep and you have a chance to attend at least one Symposium, give it a shot!
The longer overview....
So many stories, so much research is being done and is help funded by the organization and it was great to see so many healthcare and nurses mixed into the crowd of those hit by and family members of those hit by GBS and CIDP.
Today I skipped a panel to grab a nap before the final event and overslept a little. When we got down there, most of the tables were full and we couldn't find a seat so we scarfed out food at one of the standing tables and grabbed drinks after and promptly became wall flowers. Many thanks to Jerry Jones from the Board of Directors for inviting us to sit with him at his table. I didn't realize it but I was then sitting next to and talking to Joel Steinberg, a member of the board of the organization and a member on the medical advisory board as well as being an MD, PhD, CWS, ACLS, and former GBS patient. We got to chatting and it looks like I might be able to help out a bit in giving tips and guidance on using social media as an outreach tool for both patients and medical professionals.
Sometimes over sleeping on a nap leads to nice situations...
:x
Earlier in the symposium I chatted briefly with a few other of the regional directors and liasons about the use of social media as an outreach tool. Many of them had an interest in using it but when they tried before it fell a bit flat. I really hope to be able to host a webinar for the regional directors to give an overview on how different networks can be used in outreach and kind of the different tips and tricks to using each individual network. I haven't been quite as active in my hunt for new patients on networks lately because I have had my hands a bit full with other things, but if I could coordinate a team and help guide their approach, that would be a much more effective route and it doesn't leave one person trying to devote many hours to the approach if we can spread it out by region. So I hope to try and pull that together in the coming months.
I have been very hesitant to step into any kind of official role because I know me and I know I would pour a ton of energy into it and right now my plate is full and I just don't have that spare energy. But this gives me a chance to arm the current directors and liaisons with tools to help them in their roles so I can at least contribute a little in a less direct manner. Maybe in the future I can still consider a 'point of contact' or 'liaison' role but right now I am just have a full plate.
Also have had a chance to meet a fellow GBS peep from Round Rock which is pretty awesome and got to hear a great story from them. They had a surgery a little while back and they noticed that after the surgery they had a pretty strong uptick in how they felt from their residual nerve issues as well as felt like they had more energy. Was it in part from the anesthesia they had? That would follow the idea with my ketamine therapy... >:3 Gave them a copy of my ketamine zine and info about my pain doc and really hope they have a chance to give it a try. I really can't wait to see the results. If ketamine is something that can truly offer benefit and relief to GBS patients several years out struggling with pain and a plateau of progress, it means so much to be able to see more people find relief!!
Ketamine was something mentioned very briefly in the pain management presentation but it was more as a side note and didn't have any details listed with it other than its name. While passing my ketamine zine out to some of the presenters/directors/board members/doctors I came across one doctor that has used ketamine therapy for a patient, though he didn't seem much enthused about the potential of it. I think he said he recently referred someone to go in for treatment with it but I don't think he has had a chance to talk to the patient yet about how they felt after. I hope they recieve as much relief as I have so that it starts opening doors as an option for other GBS peeps further out from onset! (Though I keep saying GBS peeps, I really do think the level of exhaustion I felt could bring up issues for those with CIDP and those that are still newly recovering from GBS. I worry that the stamina/endurance issue would cause too much of a risk for relapse. But I'm not a doctor, I just know how it felt for me. :x)
There were some great panels covering the ZIKA virus and the GBS connection and it was really interesting to see the stats that have been pulled from the affected areas.
I definitely was to look up more information on the IGOS program that tracks GBS cases. Unfortunately, they need to start recording from onset so I can't contribute to the stats but I am interested in seeing what kinds of detail they are able to collect and just how globally spread out the research can be. I learned a lot about the issues of GBS in Bangladesh and would love to learn more. (ex: there are no respirators there, if a loved one's lungs go out, family members have to take turns pumping the air. your family and friends are literally breathing for you.)
While I might not be able to make it out to the next Symposium in 2 years, this was a great experience and I hope GBS/CIDP peeps have a chance to experience it at least once in their life.
It was overwhelming in a good way to see so many people turn out and I look forward to seeing the organization grow as outreach and research continues.
For now, time to crash and sift through all the information received over the past few days and come up with a potential outreach plan for social media that could be used. :x
The only thing that bothered me more than I expected during this symposium was how unsettling/hard it was to be in the large crowded rooms talking at individual tables. The noise from the crowd was still a bit overwhelming and I guess I haven't really been in that kind of situation much, to that degree, and between the sitting/standing up all day for the panels on Friday and most of Saturday I think both had me tensing up and kind of aggravating my neck and shoulders issues but I do have a 'top-off' session of Ketamine already scheduled for October 4th so hopefully that will help get me back on track. And a day or two of resting will help get me there too. :>
TLDR: I might be helping out with online social networking outreach and teaching liaisons/directors how to effectively use networks for outreach. I met someone in Round Rock that might be giving the Ketamine Therapy a try. If you are a GBS/CIDP peep and you have a chance to attend at least one Symposium, give it a shot!
The longer overview....
So many stories, so much research is being done and is help funded by the organization and it was great to see so many healthcare and nurses mixed into the crowd of those hit by and family members of those hit by GBS and CIDP.
Today I skipped a panel to grab a nap before the final event and overslept a little. When we got down there, most of the tables were full and we couldn't find a seat so we scarfed out food at one of the standing tables and grabbed drinks after and promptly became wall flowers. Many thanks to Jerry Jones from the Board of Directors for inviting us to sit with him at his table. I didn't realize it but I was then sitting next to and talking to Joel Steinberg, a member of the board of the organization and a member on the medical advisory board as well as being an MD, PhD, CWS, ACLS, and former GBS patient. We got to chatting and it looks like I might be able to help out a bit in giving tips and guidance on using social media as an outreach tool for both patients and medical professionals.
Sometimes over sleeping on a nap leads to nice situations...
:x
Earlier in the symposium I chatted briefly with a few other of the regional directors and liasons about the use of social media as an outreach tool. Many of them had an interest in using it but when they tried before it fell a bit flat. I really hope to be able to host a webinar for the regional directors to give an overview on how different networks can be used in outreach and kind of the different tips and tricks to using each individual network. I haven't been quite as active in my hunt for new patients on networks lately because I have had my hands a bit full with other things, but if I could coordinate a team and help guide their approach, that would be a much more effective route and it doesn't leave one person trying to devote many hours to the approach if we can spread it out by region. So I hope to try and pull that together in the coming months.
I have been very hesitant to step into any kind of official role because I know me and I know I would pour a ton of energy into it and right now my plate is full and I just don't have that spare energy. But this gives me a chance to arm the current directors and liaisons with tools to help them in their roles so I can at least contribute a little in a less direct manner. Maybe in the future I can still consider a 'point of contact' or 'liaison' role but right now I am just have a full plate.
Also have had a chance to meet a fellow GBS peep from Round Rock which is pretty awesome and got to hear a great story from them. They had a surgery a little while back and they noticed that after the surgery they had a pretty strong uptick in how they felt from their residual nerve issues as well as felt like they had more energy. Was it in part from the anesthesia they had? That would follow the idea with my ketamine therapy... >:3 Gave them a copy of my ketamine zine and info about my pain doc and really hope they have a chance to give it a try. I really can't wait to see the results. If ketamine is something that can truly offer benefit and relief to GBS patients several years out struggling with pain and a plateau of progress, it means so much to be able to see more people find relief!!
Ketamine was something mentioned very briefly in the pain management presentation but it was more as a side note and didn't have any details listed with it other than its name. While passing my ketamine zine out to some of the presenters/directors/board members/doctors I came across one doctor that has used ketamine therapy for a patient, though he didn't seem much enthused about the potential of it. I think he said he recently referred someone to go in for treatment with it but I don't think he has had a chance to talk to the patient yet about how they felt after. I hope they recieve as much relief as I have so that it starts opening doors as an option for other GBS peeps further out from onset! (Though I keep saying GBS peeps, I really do think the level of exhaustion I felt could bring up issues for those with CIDP and those that are still newly recovering from GBS. I worry that the stamina/endurance issue would cause too much of a risk for relapse. But I'm not a doctor, I just know how it felt for me. :x)
There were some great panels covering the ZIKA virus and the GBS connection and it was really interesting to see the stats that have been pulled from the affected areas.
I definitely was to look up more information on the IGOS program that tracks GBS cases. Unfortunately, they need to start recording from onset so I can't contribute to the stats but I am interested in seeing what kinds of detail they are able to collect and just how globally spread out the research can be. I learned a lot about the issues of GBS in Bangladesh and would love to learn more. (ex: there are no respirators there, if a loved one's lungs go out, family members have to take turns pumping the air. your family and friends are literally breathing for you.)
While I might not be able to make it out to the next Symposium in 2 years, this was a great experience and I hope GBS/CIDP peeps have a chance to experience it at least once in their life.
It was overwhelming in a good way to see so many people turn out and I look forward to seeing the organization grow as outreach and research continues.
For now, time to crash and sift through all the information received over the past few days and come up with a potential outreach plan for social media that could be used. :x
The only thing that bothered me more than I expected during this symposium was how unsettling/hard it was to be in the large crowded rooms talking at individual tables. The noise from the crowd was still a bit overwhelming and I guess I haven't really been in that kind of situation much, to that degree, and between the sitting/standing up all day for the panels on Friday and most of Saturday I think both had me tensing up and kind of aggravating my neck and shoulders issues but I do have a 'top-off' session of Ketamine already scheduled for October 4th so hopefully that will help get me back on track. And a day or two of resting will help get me there too. :>
Thursday, September 22, 2016
GBS/CIDP Symposium 2016 - San Antonio, TX
Super excited about going to the symposium this year and looking forward to meeting some of my FB and Twitter friends in real life! >:D
I'll post pictures and details soon.
http://www.gbs-cidp.org/symposium/
Also! I pulled together a little zine about my experience with Ketamine Therapy and hope to make some posts here after I have a chance to edit a little more.
I'll post pictures and details soon.
http://www.gbs-cidp.org/symposium/
Also! I pulled together a little zine about my experience with Ketamine Therapy and hope to make some posts here after I have a chance to edit a little more.
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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