Hunting for GBS posts on my blog?

Hunting for GBS posts on my blog?

Go to the Search field at the top left of the blog and type in 'GBS', this will bring up most of my GBS related postings.

GBS - Guillain Barre Links

Guillain–Barré syndrome

http://en.wikipedia.org/wiki/Guillain%E2%80%93Barr%C3%A9_syndrome  

Guillain-Barre syndrome

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001704/  

Guillain-Barre syndrome

http://www.mayoclinic.com/health/guillain-barre-syndrome/DS00413  

Types of Guillain-Barre Syndrome

http://www.omnimedicalsearch.com/conditions-diseases/guillain-barr-syndrome-types.html  

Guillain Barre Syndrome and Its Variants
http://www.neuropathy.org/site/DocServer/GBS-AlanBergerMD.pdf?docID=1066

General Overview and Mention of Residuals
http://www.angelfire.com/home/gbs/

3 Years Since GBS Hit Me

Posting a bit early because I will be out of town on May 1st.
On May 1st I saw the Wolverine movie and later started feeling
sick with a stomach bug that started the chain of events.
------------------------------------------------------------------------

3 years

3 years since I went and saw X-Men Origins: Wolverine 

3 years since I came down with a stomach bug on Free Comic Book Day

3 years since I sat there chugging Gatorade and Chicken Soup

3 years since being well enough to board a plane to Oahu

3 years since that wonderful trip in Hawaii; the beach, snow cones, hiking & swimming

3 years since it felt like the yummy seafood ramen turned my tongue to rubber

3 years since I thought I had been eating too much because I couldn't suck my stomach in

3 years since I got sunburned so bad my shoulders felt too heavy to lift

3 years since I climbed those stairs on Diamond Head thinking how hard each step was

3 years since I broke my toe and couldn't feel the pain

3 years since stumbling off the plane, thinking it was jetlag

3 years since getting out of bed in the middle of the night because it was hard to breathe

3 years since I went in for the MRI

3 years since my husband helped shower me because my arms were too hard to lift

3 years since that night when I fell after trying to get out of bed

3 years since my husband helped me from the car to ER before I sat in the wheelchair

3 years since I sat in the ER waiting room watching Robot Chicken waiting to see a doctor

3 years since the spinal tap that confirmed I had Guillian Barre Syndrome

3 years since I chose to receive a feeding tube because eating took too much energy

3 years since I lay in bed vomiting on myself unable to cry for help, after reacting to Darvocet

3 years since I feared I would never be able to use my hands again

3 years since I shut my eyes as they laced tubes down my throat for a respirator

3 years since I first felt the effect of morphine

3 years since I told myself it was ok if I died; I had no regrets

3 years since I remember hearing the doctor mentioning I might need a ventilator

3 years since part of me yelled to myself "No! Wake Up! We Don't Need a Vent!"

3 years since I woke up with the drive to fight to get back what I lost

3 years since I could feel my husband's kiss once again

3 years since I rode the abulance over to the neurorehab, then noticing I had double vision

3 years since I was rolled along in a wheelchair

3 year since I stood for 10 seconds

3 years since I figured out how to open a damn ketchup packet again

3 years since I scooted myself along in a wheelchair

3 years since I sat at the cafeteria table with neurorehab friends, working together to open a milk carton

3 years since I took my first step in my new life

3 years since I learned how to use a walker

3 years since I walked down a hallway independently

3 years since I left the neurorehab to go home to my husband

3 years since I played around with jewelry and this crazy style called “Steampunk”

3 years since I’ve met so many talented and gifted artists in the Austin & TX community

3 years since I have found such a strong support group of survivors and fighters

3 years since I have made so many and kept so many amazing and supportive friends

3 years since my life before GBS ended

3 years since my new life began

Driving forward to 4 years.

Recent Pieces!

Darwin Prophet Benefit

It was a great time and so wonderful to see so many familiar faces as well as many new ones!

 

Many thanks to all who made it out and all the well wishes and happy thoughts for Darwin from those who were unable to make it!

 

It was a blast and so awesome to see so much support from the community for her! ♥

TX Steampunk Shirts

All designs available on RedBubble!

Socks and Mittens : GBS & the 2011 Neuro Film Festival

This film, by Catrina Sparacio, has been entered into the 2011 Neuro Film Festival from the American Academy of Neurology Foundation at www.neurofilmfestival.com. Let's put our brains together and support brain research!

One in 100,000: Dealing with GBS

Interviews from GBS and CIDP patients. Raising awareness of our International GBS-CIDP foundation and Charlotte May 2012 events.

http://www.gbs-cidp.org/

Please join us and help support research, advocacy, education and those that still suffer today.

Awareness is not just about having a general idea of what GBS is but also having an idea of the symptoms so that if it should hit you, you or the doctor can quickly diagnose it and begin treatment as soon as possible. The faster you identify it, the more quickly you can begin treatment and ideally the easier it is to help turn your body around towards recovery instead of decline.

GBS T-Shirt: Getting Better Slowly

This is a revamp of the GBS Shirt I had made last year.

I am liking how the white looks on all the different color shirts...

http://www.redbubble.com/people/turnerstokens/works/8770818-gbs-tee-in-white

Check it out! GBS: Getting Better Slowly
Find all my t-shirt designs here: http://www.redbubble.com/people/turnerstokens/portfolio/recent

Just a Peck

This is one of the most recent pieces. :)

Simple and sweet, this moment in time; all I needed was a peck.

Been on a birdy kick lately... More goodies to be uploaded once I get back in town!

My GBS Experience: Hospital to Half Marathons!

This was around May 19, 2009. This was one of the first days I was at the hospital. I could still move my arms, just not above my shoulders. By then I believe my legs had been pretty hard to move around below the thigh. I think this was before i got the pick line so they had to keep sticking me to get blood. ;p
There were a couple nurses during the time I was there that got a home run first try when they tried to draw blood but they were far and few between.
Evidently at some point during the rapid decrease I told my family I didn't want any pictures taken because I wanted to forget all of this as soon as possible. I actually wish I could have seen what I looked like on the vent. I have vague memories like waking up and having my arms strapped down so I didn't pull the tube out (like my arms even had the strength to do much more than slightly wiggle or flop around...) and another where I have a sensation of floating (they moves me from the bed to chair using a lift I found out from my mom) but any more than that I don't remember. I think there are three days I can't remember anything from. I think from May 24th-27th... not sure...

I believe this is a shot about 4 days into my hospital stay though I am not positive. Just recently received it from a friend that found it while looking through her stuffs. It was before the feeding tubes and respirator evidently. :)

Something that had been sitting with me for a while since I was sick in the hospital. I came down with Guillain Barre Syndrome and during the slow crawl to the worst of it I was able to use my hands to write notes when I couldn't talk due to various reasons. All of these are real notes I wrote while in the hospital as paralysis slowly overtook me. Some were taken during my climb back up. I wanted to do something with them but I didn't quite know what. Hehe, please don't mind the misspellings, the drugs they had in me were doing who knows what to my mind. These were some of the most legible notes left over from my stay in the hospital.

This was taken once I was moved to the rehab facility in June. The nerves in my eyes had become weak so I was having double vision for a while and had to build back strength by alternating an eye patch from eye to eye. Yarg! Pirate!

This was three weeks into the rehab I think. Can't quite remember. we were allowed to have pet visits but they had to stay outside so my mom and my husband brought jules up to visit me. :) It made me really happy. I really missed my pets. I was just kind of getting sensations back into my hands so the feeling of his fur was really interesting. my hands pretty much had to be desensitized, even now i am working on coarse textures.

it was pretty hot outside so we didn't keep him out there too long. plus he is an inside cat so being outside was a bit of a "Whoa" exp for him. =)

i went into all of this at 218 lbs at the ER. when they weighed me at the rehab i was 200. by the time i left the rehab i was 190.

Ah, car transfers... well worth the effort to get away from rehab for a day. =p
This might have been the same day we took a car ride to Sonic and I got to see a couple friends who drove up from Houston.

At this time my back/core/shoulders/neck was all still kind of weak so sitting up for a long amount of time was a bit tiring. The belt around my waist is called a gait belt, my husband or mom would use that to help lift me into the car when i would go to stand. At this time I was not using a walker yet.

Yay! Nap Time! :3

I think this was the third trip i was able to make home on a Saturday and I decided to give the computer a try.

by far, my favorite and the best picture ever. this is the wipe board at the rehab where they list the names and the dates of who gets to go home.
my name went up there once before with 7/3 and when i asked around no one knew who put it up there so it got erased... that kind of sucked. but this was a hard date that got agreed upon after a staffing with all the doctors and physical therapists. hells yeah. ready to kick booty out that door.

At this time I had been using a walker and was able to walk short distances but sometimes I needed to balance myself againts things. I was fixing the cat's meat for them. My goal was to try and start fitting back into my regular routine as fast as possible. :) The cats were happy about it.

We walked/jogged in the 2009 Houston Turkey Trot. I am still waiting for the results to be posted. It was a 5k (~3 miles) and I think my sis and I finished in 45 minutes. I can't complain, I'm just happy to be up and moving. =)
The Results Are In! There were 2643 runners.
Place - DivRank - Tag# - Name - Guntime - Pace - Tagtime (from when we cross the startline to finish)
1658 - 102/123 - 4542 - Adam Turner - 40:44 - 13:35 - 36:24
2112 - 111/133 - 4544 - Joanne Ralston - 48:35 - 16:12 - 44:14
2115 - 184/208 - 4543 - Lisa Turner - 48:37 - 16:13 - 44:16
2117 - 14/15 - 4546 - Terry Ralston - 48:44 - 16:15 - 44:20
Joanne jogged (sometimes dragged me ;p ) with me in the race so next time I'll have to try and jog 2 miles with her before we start to walk. :D Munyah!

At the starting line with my sis at the San Antonio Rock 'n' Roll Marathon and 1/2 in November 2010. She and I did the half in around 3:48.

At the finish line with my sis at the San Antonio Rock 'n' Roll Marathon and 1/2. She and I did the half in around 3:48.
She got the beer and I had Adam carry a Red Bull for me. :3

At the starting line in Las Vegas for the December 2011 Rock and Roll Half Marathon!

I finished! It was only a few minutes faster than last year but I finished again! Rawr! :3

The road to recovery can be tough but the only way to get to the end of the road is by putting one foot in front of the other. Doesn't matter if you are in a wheel chair scooting along, popping wheelies with a walker, or jogging like a funky chicken. Just keep driving forward.

But You Don't Look Sick: The Spoon Theory & GBS

I'm my second year of recovery from GBS I stumbled across this posting after it appeared on one of the Facebook GBS Groups.

Many times, those with GBS who have recovered past the point of needing a wheelchair/walker/cane may run into a bit of a situation where you still feel weak and the exhaustion/pain is daily. Because people can't see the problem it can get hard to get them to understand what you are dealing with every day. Take a read through this article and consider passing it on to family, friends and others who may be in your same situation. The way the author has to plan out the day based on actions is very similar to how a GBS patient deals with planning their days depending on their energy/pain level of the day.

However, also keep in mind that GBS patients do tend to recover, so maybe keep in mind how many spoons you have today, versus how many spoons you had while you were in the hospital. :) Recovery can be hard to see sometimes with GBS but when you are able to look back during your road to recovery and compare where you are now versus a few months ago, it does help.

The Spoon Theory
by Christine Miserandino, via http://www.butyoudontlooksick.com/
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Why all the GBS posts?

I'm posting a bit early but May is Guillian Barre Awareness Month and more and more people have found my blog while searching for GBS related topics so I wanted to offer some resources for them should they find the site.

Hehehe, move along now, nothing much more to see! Though I do plan to do a 3 year anniversary post on May 18th. :)

Robert Mosley - GBS Family and Friends

This was something that had been posted in the Facebook group that I wanted to share in case others were hunting for more information on GBS:

This was written by Robert Mosley and is posted under the "Discussion" tab on the Guillain-Barre Syndrome Survivors FB group. We have several new members and I wanted to post it again because it is a MUST READ for all of us. https://www.facebook.com/groups/38007116452/

This is for the family and friends of GBS survivors:

First of all, I am not a GBS survivor, my best friend is. I am a below knee amputee, so I have my own demons. GBS not only affects the inflicted, but everyone in their life. Because of its relatively unknown nature, ability to affect everyone differently and general public unawareness; GBS the disease, and by association its survivors, suffer from a lot of the same maladies as Fibromyalgia victims of a few years ago. In one word, disbelief.

Succinct, short, and to the point - DISBELIEF. People tend to not believe the symptoms a GBS sufferer endures. They write it off to 'you're just exaggerating', 'it can't be that bad', or even worse 'you just like taking the meds and being lazy'. Nothing a GBS victim says or does seems to make sense to those around them. The reason, or what I believe to be the reasons, are two-fold.

First - Most people generalize the onset of GBS as most any other medical procedure. The body takes the injury, heals, and recovers. GBS is unlike most injuries. You recover, but only to a point. The worse the affliction, the better the chance a full recovery won't be achieved. In most severe cases, physical therapy is only a partial fix. Unlike a broken bone or other type of injury you can't rehab back to 'normal'. GBS sets a new bar for 'normal' that most people can't appreciated.

Second - Family and friends associate the GBS survivor with the person they were before they were afflicted. That person, to be blunt, is gone. The survivor is a new person with new limitations mandating a different lifestyle then they, and the people around them, are used to. There are two new constants in their life - PAIN and FATIGUE.

PAIN - Depending upon how severe their battle was, most GBS sufferers will have to learn to live with a certain level of pain for the rest of their life. Be it a tingling sensation in their hands, numbness in the lips, or feeling like their feet are dead weights with no sensation, the pain becomes a new factor that most be dealt with. Most people have no idea about constant pain, other than maybe when they had a toothache for a few days, or they hit their finger with a hammer doing the deck. They associate the pain as temporary, the body will heal, and the pain goes away. The younger the person is, the harder it is to comprehend constant pain. With a GBS survivor, the pain does not go away. It's always there, sometimes quiet and nagging, other times shouting for attention. Pain meds are a necessary evil. However, with increasing technology in implantable pain pumps, dosage and management may be taking a turn for the better.

FATIGUE - This is the hardest thing for a non-GBS victim to understand. How can someone lay in bed, or on a couch, for two days, and still be tired? The damage done to the nerves does not allow the body to fully recuperate as we 'normal' people know it. They never fully recuperate, their body has established a new threshold for what is normal. It has also set a new 'wall' not to be exceeded. Most of us can push our body's limits, relax one or two days, and we're back to normal. GBS sufferers can't. They pay a much higher price so exceeding the limit set by their body. It can be best explained, to the layman, as pushing yourself hard at the gym. Your muscles ache, you feel like you can hardly lift your arms or legs. This is what the fatigue factor does to a GBS victim. It doesn't always take a lot to reach this point. A few hours walking around the mall, doing normal errands getting in and out of the car, three loads of laundry or just mopping the kitchen floor can put a GBS survivor in bed or on the couch for days on end. It's hard to comprehend, it's even harder to believe, but it's real. Add in other side factors; such as depression from not being able to do what you could do before, allergies that used to bother you now pound your body, even the weather. A low pressure system comes through and we see rain. A GBS victim who had a serious bout feels pain. Debilitating pain that can last for days.

So, as the family or friend of a GBS survivor, what can you do? Let's start with what not to do. Don't pity them. They don't want your pity. Don't coddle or suffocate them. They are still the same person they were before the injury, their lifestyle has changed. They haven't! The difference you're seeing in them is the adjustments they have to make to get through each day.

What you can do, and it's the biggest help for them, is quite simple. Believe them. Whatever they tell you, believe them. It's hard. It goes against what most of us know, but their stories are true. Believe them, work with them, and give them their space when they want it. In others words, continue being the friend or family member you were before the injury and acknowledge some things have changed. Nobody wanted them to, but they did. Fighting it, or the person, doesn't help. Arguing, threats, or demeaning statements do not help. Believe me, if a GBS survivor could go back to their pre-GBS life, they would! Life has become a constant challenge. Don't add to it. Get some books, visit websites, attend a seminar. In other words, be a friend. Learn what you can. It's amazing: people will buy a Wii and spend hours reading the manual and going online to learn all the little tricks and shortcuts so they can fully understand the system. People will purchase a big screen television and surround sound and pore over manuals for days getting it 'just right'. But they won't spend a little time trying to understand and learn about a disease that affects someone special to them. If the person means that much to you, try to get an appreciation of what they're dealing with. If you don't have time for that, you're probably not that good of a friend, and should just move on. It would be better for all parties involved.

Since my best friend was afflicted over 6 years ago I've learned a lot. And I learned a lot of it the hard way. Despite the changes made to my life by my amputation, I still doubted some of what she told me. But whether I doubted it or not, she was still my best friend and I believed her. I went with the trust and honesty we've always shared and attempted to see things her way. Through research, reading books, and just reading forums on sites like this I'd like to think I've become a better friend. I accept when plans change, things we want to do that don't get done, mood swings and days of rest. I'm mad as hell at the disease for what it did to hear, but I don't get mad at her. It's pointless. Just like you can't change the laws of gravity, or the color of the ocean, you can't change the damage done by GBS. You accept it, and move on. You don't let it come between you.

In closing, GBS changes the life of it's victims. If a family member or friend has been afflicted by GBS, then the disease has also affected your life. How you handle it is your decision. But remember, the best thing you can do can be summed up in two words: BELIEVE THEM. What they say is real, GBS is real, you need to be real. Really.

.

GBS - Celebrate every achievement

When I was at the rehab I was reading a book and it had a little story in it that kind of stuck with me. Every time I would start to get frustrated with my progress I would try to remember the story.

A woman was running through the jungle and was being chased by a tiger. Ahead of her she saw a clearing of the trees. When she finally reached it she was met with a cliff. She looked behind her and saw the tigers coming close. She noticed a vine leading down the edge and climbed down. She then looked below her and saw two more tigers circling below her. She then looked back up only to see a mouse beginning to chew at the vine. She then looked to her side and saw a strawberry bush with the sweetest juiciest strawberry hanging in the leaves. She looked up. She looked down. She then plucked the strawberry and began to eat the most delicious strawberry she had ever tasted.

Everyday I would find something that would be my strawberry; whether it was being able taking a sip of cold water, finally be able to open a ketchup packet or stand for 20 seconds. With all the hard things we face in the road to recovery and just life in general, sometimes the achievements get lost and we don't take the time to acknowledge and truly appreciate them.

The story is from a book called Comfortable with Uncertainty: 108 Teachings by Pema Chodron.
http://www.amazon.com/Comfortable-Uncertainty-Teachings-Pema-Chodron/dp/1570629722
While the writing is generally from a Buddhist point of view, I believe that everyone can take something away from at least one of the short chapters.

GBS Groups on Facebook

This is by no means a complete list of online support groups for GBS but these are some of the ones I am most active in. If you or a loved one has been hit with GBS, please try reaching out to groups. It helps to know there are others in the same boat or at least who have experienced similar situations as you. It also helps to have a good place to vent where people know exactly where you are coming from.

Guillain-Barre' Syndrome Survivors
https://www.facebook.com/groups/38007116452/

Guillain-Barre Syndrome Survivors Network
https://www.facebook.com/groups/2379559053/

Guillain Barre Syndrome
https://www.facebook.com/groups/2585256706/

GBS Survivors!
https://www.facebook.com/groups/203039573042938/

Information about the Guillain–Barré syndrome (GBS)
https://www.facebook.com/pages/Information-about-the-GuillainBarr%C3%A9-syndrome-GBS/249044018888

Jules and Vincent Cosplay Tentacle Kitty

Don't know what Tentacle Kitty is?
Go check them out!!

Professor Elemental CONFIRMED for Comicpalooza!

For many of you, this possible event just became a MUST ATTEND event.

Yes TX Steampunks, The Professor is coming stateside and is ready to party.

On top of this there is rumor of a SteamDrunks book release party that may happen during Comicpalooza...

Coincidence or just awesome cosmic alignment?

 Trying to place the name Professor Elemental? Check out the videos:







Go grab your tickets for Comicpalooza ASAP: http://comicpalooza.com/
Only $35 right now for a 3-Day Pass if purchased ONLINE.

Keep an eye on the blog for details about possible after parties and general celebrations of steampunkery to go down at Comicpalooza.

Bayou City Art Festival Artist: Gypsy Wagon Art

Whimsical antique colors and creations draw you into their work letting you drown in the rich world they have made. So far as I go back through all my cards I have collected from the event, this is by far my favorite website to visit as well. Just like their booth, it draws you in, sets the tone and lets you explore their world.

One of my favorite parts about their work is that some are not just the stained glass work but also incorporate metal and bead work. Keep an eye on the belt around the first mermaid. The website has a full view of the close up. Be sure to check it out. This is all very excellent work!

Take some time to brown through their fantasy today: http://www.gypsywagonart.com/

Bayou City Art Festival Artist: Works of Man - Mathew Naftzger

This was one of the first artists I stumbled across at the festival and it really set the pace for the types of artists I knew I would be most attracted to. At first glance his pieces look like magnificent metallic sculptures; then as he brings them out of their glass case you see each are mobile with a variety of movements and hidden compartments. My favorite by far was the Rollerpillar.

I do wish I had a chance to spend much more time at his booth but I ended up getting pushed on by the others I attended the event with. Granted, If I had spent more time at the booth it could have been quite a few hours to pour through all the gizmos and gadgets of his creations with all their baubles and bits!

Do be sure to check out the online gallery at http://www.worksofman.com/!

Bayou City Art Festival Artist: Smith Map Studio

As the day wore on and we passed more traditional works of photography and paintings another vendor's stall began to draw me in with their gritty design. Local to Texas (from Leander) I had found Christopher Alan Smith's booth for the Smith Map Studio Hand-Drawn Maps. Amazing details, lovely colors and perfect layouts; this is an artist I'll be saving up for to grab quite a few prints soon. Be sure to check their studio out online at http://www.smithmapstudio.com/!