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.


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~

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

A Good Reminder of My Progress


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

Monday, December 25, 2017

2017

This year has flown by!
Had quite a few changes this year related to my healthcare including switching to a new pain care clinic. Luckily I was able to find one that also offers ketamine infusions!
Not only that but we made a pretty big discovery during my last infusion. Instead of using Versed, Valium was used and SO MANY of my bad side effects we lessened or stopped. I did not have any of the anxiety spiral, none of the intestinal cramping and vomiting once I got home and I bounced back from the infusion in 4 DAYS instead of the typical 10-15 days. Very excited about that discovery and I had no clue that Versed could have been messing with my system like that!
I was extremely fortunate to be able to find this new clinic through my fellow GBS peep, Jessie!
(Her blog is http://gbssurvivorblog.freeblog.site/)

I do plan to write a recap of some of the hurdles that came up this year, but know that in the end I was very lucky for everything to have fallen as it has.
My main pain doctor is actually an occipital neuralgia specialist that actually worked with my neurologist I have had since GBS hit and even trained his nurse practitioner! (And now we have like 5 more items on the list to try out for alternative pain treatments!) The clinic offers ketamine so I can still receive the relief that I have been from them at an affordable price. This clinic cares about the balance of quality of life and the pain scale.
While the first half of the year was quite a bit of a battle, this is rather nice to be able to look towards 2018 on such solid ground.

Happy Holidays and I hope everyone has a warm and safe New Year!

Sunday, May 21, 2017

Turner's Tokens' Telegram

Steampunk Peeps -
I want to make a little Steampunk Zine that will be passed out for FREE at events and such and I want to highlight Projects, Events and Artists.
Think along the lines of a penny press/dime novel/penny dreadful.
Planning it to be 12 pages long, black and white, staple bound and offered for free to anyone that wants one. Right now my goal is to have 1 issue pulled together by Steampunk November.
This could be a fun way to advertise any of your projects, art pieces or story tidbits.
Feel free to join in, or just lurk here:
https://www.facebook.com/groups/1524579990927003/

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/.

Friday, February 10, 2017

General Update

General
Been using my blog a bit more for my GBS experience lately.
I haven't forgotten steampunk, just had my hands a bit full lately with the health stuffs. >:3
Although I do want to say that since my regular job has picked up, I have not been able to really participate in the steampunk events nearly as much as I wish I could. Still getting back into the swing of things with learning to balance the fatigue/energy between work and life. I still definitely have some art projects on the back burners, looking forward to having some time to bring them to life!

Texas Steampunk Connection
Going to be joining in on a podcast with the Texas Steampunk Connection this weekend!
https://texassteampunkconnection.podbean.com/
If you are in TX and a Steampunk, give it a listen! Good stuffs, great topics and an enjoyable listen!

Recently Updated the 2017 Event List! 
If you have some to add, shoot me a note or comment here with the Name of Convention, Dates & Website!

Monday, October 31, 2016

Another Ketamine Experience Being Documented!

When I hit the GBS/CIDP Symposium in San Antonio I had the happy encounter of meeting another woman from the Austin area (Round Rock) who was 4 years out from GBS onset. After talking, I mentioned my Ketamine Therapy Experience and she started to describe the benefits she felt after having surgery post GBS. It was exciting to hear how she felt and we thought that it might have been a benefit of the anesthesia they used. After staying in contact with her I passed on my details for the Austin Pain Associates I was referred to earlier this year and she was able to even get in contact with the same doctor that has been helping. In particular, he has been very open to more experimental and progressive pain management methods.
She is now signed up and ready to start a 6 session set of the Ketamine Therapy on November 1st.
Keep an eye on her updates here: http://gbssurvivorblog.freeblog.site/

Wishing you the best Jessie and I hope you find relief!
Love, hugs and prayers. You are a fighter! RAWR!!

11/2/16 UPDATE: There was a delay in her treatment. Keep an eye on her blog for updates!