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.

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!

Tuesday, September 27, 2016

Ketamine Therapy for Residual Nerve Damage via Guillain Barre Syndrome - Link Post

Short Answer? It was exhausting but totally worth it. It helped knock my constant level 6 pain down to 0-2 for 2-3 months before I decided to go in for a 'recharge' 4 months later.
*WARNING* I REALLY do believe that this exhaustion could create problems for those just recently recovering from GBS. Looking back, this Ketamine treatment is not something I would have agreed to until I was around 4 years out because the exhaustion was so intense. It see it as a great tool for when you feel your progress has plateaued after hitting the 3 year mark.

PART 1 - CASE SNAPSHOT & GENERAL KETAMINE NOTES
http://www.turnerstokens.com/2016/09/ketamine-therapy-for-residual-nerve.html

PART 2 - CONCERNS ABOUT KETAMINE USE
http://www.turnerstokens.com/2016/09/ketamine-therapy-for-residual-nerve_26.html

PART 3 - A BACKGROUND OF MY GBS CASE
http://www.turnerstokens.com/2016/09/ketamine-therapy-for-residual-nerve_30.html

PART 4 - OCCIPITAL NEURALGIA & CURRENT GBS RESIDUALS
http://www.turnerstokens.com/2016/09/ketamine-therapy-for-residual-nerve_27.html

PART 5 - COST BREAKDOWN
http://www.turnerstokens.com/2016/09/ketamine-therapy-for-residual-nerve_69.html

PART 6 - FIRST TREATMENT
http://www.turnerstokens.com/2016/09/ketamine-therapy-for-residual-nerve_79.html

PART 7 - SECOND TREATMENT
http://www.turnerstokens.com/2016/09/ketamine-therapy-for-residual-nerve_36.html

PART 8 - THIRD TREATMENT
http://www.turnerstokens.com/2016/09/ketamine-therapy-for-residual-nerve_90.html

PART 9 - FOURTH TREATMENT
http://www.turnerstokens.com/2016/09/ketamine-therapy-for-residual-nerve_73.html

PART 10 - FIFTH TREATMENT
http://www.turnerstokens.com/2016/09/ketamine-therapy-for-residual-nerve_37.html

PART 11 - SIXTH TREATMENT
http://www.turnerstokens.com/2016/09/ketamine-therapy-for-residual-nerve_65.html

PART 12 - RECOVERY/WHEN IT STARTED TO WORK
http://www.turnerstokens.com/2016/09/ketamine-therapy-for-residual-nerve_92.html

PART 13 - RIGHT NOW & FUTURE TREATMENT
http://www.turnerstokens.com/2016/09/ketamine-therapy-for-residual-nerve_96.html

Monday, September 26, 2016

Ketamine Therapy for Residual Nerve Damage via Guillain Barre Syndrome Part 13

RIGHT NOW
So right now it is near the end of September and I am still going strong. I do notice the pain creeping back in and currently have another Ketamine Therapy Treatment scheduled for October 4th. I had kind of been hoping to have had one of the 'Top Off' sessions done before the GBS/CIDP Symposium in San Antonio but timing just didn't work out. There was a chance to have gotten one on September 20th but I worried about the exhaustion knocking me down and I wanted to be feeling my best when we travel down for the Symposium.
I know this is a long document but I hope those who have a chance to read it have a better understanding of what they are in for if they consider this route for treatment.
The Ketamine Treatment Therapy helped give me more hours and more energy to my day and tremendously dropped my pain. I hope that many more GBS patients have a chance to consider it for tackling residual pain once they are a few years out.
I say a few years out because I honestly do not think I would have been able or willing to continue the treatment with the amount of exhaustion that slammed into me. Once I was 4 years out seemed to be where it felt like I had plateaued a bit in my recovery and I think this could have helped me get back on track to a better life.

I am currently training for a half-marathon in San Antonio to be held December 4th.
Looking forward to doing many more!

This will be my 4th Half-Marathon and during the training I can already notice a big difference in how I am feeling compared to the other three I trained up for. I have been training outside, in all sorts of weather and heat with natural inclines whereas prior to the ketamine treatment I did all of my training in air conditioning on a gym treadmill with very little incline. On top of that I am eat breakfast, working, eating lunch, exercising, cooking dinner and sometimes going out to socialize in the evenings. This has been a HUGE improvement on my quality of life.


If you give Ketamine Therapy Treatment a try, please don't hesitate to reach out to me!

I am more than happy to talk more about it and I hope more people can benefit from it like I have.

Lisa Turner, Austin, TX
turnerstokens@gmail.com

Please use "GBS" in the subject line of e-mails.

Ketamine Therapy for Residual Nerve Damage via Guillain Barre Syndrome Part 12

RECOVERY AFTER THE KETAMINE TREATMENT
Over the next week I started being able to move around a bit more and slowly my energy was coming back. For that first week though, I was basically feeling like I had been set back to maybe 2 years after onset and it was pretty depressing. However, every day I could see and feel improvement to getting back to my normal.
It was a bit frustrating the second week. I noticed that my constant pain had started to drop and I was feeling better, but my exhaustion still kept me in bed or on the couch a lot.
Finally by the third week out my energy felt like it was back to where it was prior to the Ketamine and the pain was only around a level 2.
But here was a new problem that cropped up for me:  I was enjoying the lack of pain but I still had very little natural endurance. Prior to the treatment I had a warning system figured out with my body. If I was overdoing it I would get a cold sweat or a low temp and I would know to back off or stop activity for the day. I no longer had this and there were quite a few times where I out shopping and felt like someone pulled the rug out from under me. It took me a while to re-figure out when I needed to stop for the day.

WHEN THE KETAMINE PROVED TO WORK FOR ME
Four weeks out, I felt the best I had in 7 years and it honestly shocked me and I continued to improve. Most days were full of 0-2 pain levels with an occasional 4-6 day if I overdid it the day before. By this point I still was not willing to consider ever getting a Ketamine Treatment again though. I wanted this to benefit me at least 3 months before I would consider it again.
In the evenings I still take two 5mg hydrocodone, one 350mg Soma, and one 10mg Amitriptyline. That, plus the results from the Ketamine Therapy, has gotten me into an awesome balance and I have days where I almost feel as good as I was before GBS and I am actually living life again.
I spent June and July as a bit of a honeymoon for myself for finally feeling alive. I was able to pull work hours, cook and do chores and STILL have energy to go out and do things with friends in the evenings. I was even able to do road trips from Austin to Houston for work and still had energy to spend time with family or go out to dinner after work. The impact that the constant pain was having on me was a bit startling for me to see once it was gone.
In August I began training for a half-marathon I plan to walk/jog in December 2016. I have done a few prior to this (post-GBS) but the training I have been doing has been much better than before. I have been able to be training outdoors with all the natural heat and inclines where before I was always having to train in a gym with AC at no incline. That is a HUGE improvement. I am working, cooking, doing chores, exercising and going out to evening events, sometimes all in the same day! I haven't been able to do that since before May 2009.

Ketamine Therapy for Residual Nerve Damage via Guillain Barre Syndrome Part 11

THURSDAY - TREATMENT 6
Finally. The last day. I just wanted this entire ordeal over and to have a chance to crash hard and get over the exhaustion. By this point I was estimating the number of steps between the bed to the shower, from the shower to my clothes, from my clothes to the car downstairs, from the car to elevator, from the elevator to the medical chair. I still came in at a pain level of 6 and left the same. This time I didn't bother with the Kindle other than starting my music off right away and closing my eyes. There was a new nurse on duty this time around and I asked for an extra dose of the Versed. I still had the same dreaded spiraling sensation of just drowning in doubt and feeling like a fake. At this point, attempting to ever do a Ketamine Treatment again was a solid “NO” from me. But I tried to refrain from posting much about it online because I knew that the exhaustion could be masking any benefits and I really needed to wait until the exhaustion passed before I decided how I felt. If it meant going through this hell again, it would have to be a year before I ever came near Ketamine again. (I have since changed my mind on that.)
It was a pretty blurry memory since this was the highest dose and I think the Versed kicked in a bit better.
It just makes me laugh to myself when the Ketamine kicks in and I start in on feeling like a liar and a fake. 'My pain is all just a big lie and I've lied to all my family, friends and coworkers. Right now I feel AMAAAAZING.' And guilty because I don't hurt. Then of course I get unhooked and it all comes slamming back into me like a brick wall. By the last couple treatments I learned to keep my eyes shut the majority of the time and that kept the headache down a LOT.
Once my husband picked me up, I again needed help getting into the car but I wanted to celebrate the last treatment and we stopped for a celebratory smoothie. Once home I was helped onto to the cot and I passed out until around 11pm and hauled myself up to the real bed.


A few days later - The exhaustion was still bugging me and washing my hair was using too much energy so I went and chopped it all off. :x



Ketamine Therapy for Residual Nerve Damage via Guillain Barre Syndrome Part 10

WEDNESDAY - TREATMENT 5
I was so wrong. Again my feet were yanked out from under me and this treatment felt like slamming into a physical and emotional wall. Every piece of me just wanted to give up and stop. For this round, all the chairs were taken so I got a medical bed instead so that added a bit of strain to sitting more upright and not having the arms of the chair to support my upper body.
The luck finally ran out on being able to use my left hand to hook up the IV. They tried both hands for a few turns and on the second try they got my right hand.
I went in around a 6 pain level and left at 6. It took about 15-20 minutes before the Ketamine slammed into me and just pushed me off a cliff.
I probably spent 5 minutes fumbling with my Kindle tablet before I was finally able to escape the game I was playing and just turn the tablet off. I had the music playing prior so at least I didn't have to struggle with that. I think I received extra Versed this session but I vaguely remember the nurse checking on me to give me the extra shot to the IV. I spent the next 3 hours just spiraling in my thoughts: it all being a waste, my pain was just fake, I felt like an imposter, I was just making up all the pain cause at that moment I felt fantastic, this was a waste of my time, the doctors' time, my boss' time, a waste of money for the treatment and a waste of money for every day I was missing work to give this a shot. I was a waste of time and money to my husband; we had been married for like 6 months before I got hit with GBS and all of this was just a culmination of complete failure. I basically just circled and swirled in those thoughts for about 3 hours until I opened my eyes to them unhooking me. This isn't worth it; I can't do this; fuck Ketamine: that was my mantra blasting itself in my mind as I was wheeled out from the therapy and down to my husband's car. We skipped the smoothie and went straight home. My husband had to help me through the front door again and to my cot. Every few steps I had to stop and catch my breath. I felt exhausted and broken; with only one more treatment left it was pretty easy to just say no more, I'm done, I'm out. After all, I felt no different than I did from the start of all of this and what difference could one of the 4 hour treatments make? I could just call it quits and move on to the next option. I broke down crying a bit and my husband hugged me. He chuckled and said "Maximum effort~" and though cheesy, it was a moment where I was able to  kind of swallow the doubt and turn around and think just one more day, one more treatment and then all I have to do it get past the exhaustion and wait to see if this whole ordeal would give me any benefit or improvement.
I crashed on the cot and dragged myself up to bed around 11pm that night.
"Maximum effort" was a catch phrase Deadpool, one of my favorite characters, used in a movie recently. Cheesy, but the sentiment was true... :x <3 nbsp="" p="">My mantra of the day was still: "Never doing this again. Fuck Ketamine."


Ketamine Therapy for Residual Nerve Damage via Guillain Barre Syndrome Part 9

TUESDAY - TREATMENT 4
I was expecting to get knocked back on my butt with the increase of the Ketamine mixture. Luckily, it felt like my body was kind of growing used to what to expect and how to process it all. Maybe I was finally past the hardest part. I went in at a pain level of 5 and left at 5. I believe it was all the bed rest that had me feeling so much better when it came to dealing with the Ketamine and how I needed to deal with it all. (Eyes closed the majority of the time, I asked for additional Versed this time, had pillows to keep my arms propped up a bit more to reduce the stress on my shoulders since I would be sitting up for 4 hours, was able to request the reclining chair, requested a blanket before it all started so I would stay warm, and overall went in feeling a bit better about the process.) They continued using my left hand for the IV. I still had the mental trip of feeling like I was falling down a rabbit hole filled with thoughts of uselessness, failure, exhaustion, wasting money and time, and overall anxiety about the ordeal, but I was expecting that since it was becoming the regular experience. I kind of feel jealous about those that get to have all the enjoyable hallucinations and happy trips... I guess I am just a high strung worrier and that gets amplified tenfold. By the time it came to transfer to the wheelchair, I was able to transfer pretty easily; transferring to the car was not too hard. We stopped for a smoothie again since it helped sober me up a bit faster last time. Once we got home I was actually able to stumble and lean my way to the front door and to my cot. I definitely was doing a bit better this time. This spoke well for the next session. My mantra became 'only 2 more days' whenever I had an rough moment that day. My husband chimed in a few helpful reminders when the going got tough at times. I was able to make my way up the stairs to the real bed after a few hours of resting and was even able to grab a shower before heading to bed for the rest of the day.


Curtains and the infusion bag were pretty much my entire view for the duration of the treatments aside from glancing at my tablet to operate it the best I could. I  could not read what the bag said which is why I took a picture of it to look at later. I had physical pain trying to force my eyes to look up.



The weekend rest had me feeling much better and recharged. 
Just in time to knock me back on my butt... Round 4.
The picture below accurately shows how my vision was for me. 


Ketamine Therapy for Residual Nerve Damage via Guillain Barre Syndrome Part 8

THURSDAY - TREATMENT 3
I was dragging for this appointment but made it in. Pain wise I went in around a 6. This time when I was called back, both hospital beds were taken and I was given a chair that would recline. I wish I had known about this before! It was so much easier to sit/lounge with the arm rests! I made a mental note to request this moving forward. Before the Ketamine started I asked when they figured I would be done and was able to text my husband details prior to all their questions while I was semi-sober. They continued using my left hand for the IV.
While the switch to the chair was a nice change, the cloth walls were a bit closer around me which kind of made me feel a bit claustrophobic (which normally isn't an issue...) and there was a sliver of a window pane visible from one of corners. Again, normally this would never even bother me; but when the Ketamine treatment started to kick in, the light sensitivity amped up on me and I fought to keep my eye closed the majority of the time. I wondered if it would be weird to bring in one of those sleeping masks with me for the next treatment... :x
Whatever solid ground I thought I was on when it came to getting a handle on these Ketamine treatments was quickly swept out from under me. This time the treatment hit me harder and faster than before and I was rather out of it when it came time to unhook and roll out to see my husband. It took me a few tries to transfer from the chair to the wheelchair to be rolled out and I needed a bit more help getting into the car this round.
I did still want to celebrate it all being half over so we stopped for a smoothie and a bagel before heading home. Sucking down the smoothie on the way home also seemed to help clear my head a bit by the time we got home. I still needed help from my husband to get through the door and to my cot without risking a fall, but since I kept my eyes closed the majority of the time, the headache was much less; mainly it was the exhaustion taking a toll on me. I left the facility around a 5-6 pain though. At this point I was doubting I would be seeing any benefit from these treatments, but I refused to let myself back out from them half way if there was even a slim chance of it dropping my constant pain.
Friday and Saturday were pretty much full bed rest days. Lots of water, simple foods and solid time being spent flat on my back, or at least my side. I got quite a bit of Netflix series binged though with the exhaustion, my attention and concentration were a bit shot. I would guess I had maybe 6 hours each day of being awake. 3 hours in the afternoon and 3 hours in the evening after crashing a few hours.
By Sunday night I was feeling a bit cooped up and restless so at least some of the exhaustion was going away. My pain however was just hovering in that 6 range. This all felt like a waste of time and money. I told my husband, 'Even if I beg, don't let me cut this short. I need to give the full treatment a try before I throw in the towel and look for the next option.'
Monday I was well enough to sit up and work at the computer a little bit and watch some Netflix from the couch while sitting up. We also went out and grabbed a bite to eat for dinner. It felt like I was finally coming up for air from the exhaustion... Just in time for the next round of treatment.



Round 3! Rawr!


The cats liked to keep me company on the cot...