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.
SNAPSHOT:
As of July 1st 2016, I have had more energy to handle work, exercise and my social life than I have in 7 years since getting hit by GBS in May 2009.
I was extremely skeptical going in for the Ketamine Therapy; after every treatment I felt sick to my stomach, had horrible headaches, blurred vision, extreme fatigue and all I could think is, “This isn't worth it." (I often spent the rest of the day waiting for the pain/exhaustion to pass or for me to pass out.)
It took 3 weeks out of my life; I was pretty much couch/bed/cot bound but now I'm willing to accept the validity of the treatment as something to consider as a viable option for further pain treatment.
At this point, I think I may be the only person to have tried using Ketamine as a treatment for the residuals of GBS.
Prior to the Ketamine Therapy I was weaning myself down on my evening opiates. I had gone from a total of 10 mg x 3 through the evening, down to something around 2.5 mg x 1 before the pain and exhaustion from the Ketamine Therapy bounced me back to my 10 mg x 3 in the evenings.
During this stair-step down, I was in a lot of pain, trying to suck it up and deal with it between Advil and whatever would knock me out for the night. This was easily affecting my daily life; I was more tired than usual, my concentration shot, my temper cut short because I was juggling the pain all day, and overall my work/life balance was crap.
I went in for the Ketamine Therapy the week of May 23rd. Over the course of 2 weeks, I had six ~3.5 hour sessions to help tackle the neuropathic pain left over from GBS in the form of occipital neuralgia. (This treatment would potentially offer relief for my additional varying episodes of neuropathy in my legs, face and shoulders.)
Once the exhaustion from the treatments passed I gradually began to feel the pain dropping until one day, about 3 weeks out, I realized I had no pain that day. Until around mid September the 0-2 days have been pretty consistent with a few 4-6 days sprinkled in.
I go in for a 'top off' session on October 4th.
KETAMINE THERAPY GENERAL NOTES:
These are some basic notes on how my pain management doctor described the treatment:
Your really noisy neighbor constantly has a song blasting on repeat. You cannot escape it. That song is your pain. You know everything there is to know about the song by now. Words, chords, dance moves, history of the band, and by now the band sends you daily e-mails talking about what they had for breakfast and when they pooped last. For the first couple days it was tolerable but now you will do anything to escape it.
Ketamine Therapy goes in and reboots your brain so that everything about the song is new. And the neighbor finally turned the volume down so now it is a much more cloudy and dull rendition you are hearing while hanging out on the street outside a club while you can carry on a conversation with a friend without it distracting you.
You still pick up the bass notes, have a general idea that a song is playing but you can't quite place it and it isn't overriding you concentration. You then have a while before your brain starts to relearn the song and it becomes overwhelming again.
When the song starts getting annoying again, you go back for another less intense Ketamine Treatment to act as a soft reboot until a more intense regiment might be needed. (Ex: 1 session vs the initial 6 sessions.)
Monday, September 26, 2016
Quality of Life Chart - Chronic Pain Patients
This is something I stumbled across a few months ago. Honestly, when I first read through it, it made me cry because I realized how unbalanced my life was thanks to all the residual issues from GBS.
But I felt it was important to spread the use of this way of measuring your quality of life beyond 'What number are you on the pain scale?' Knowing where I fell on this scale gave me something tangible to shoot for and kind of reinvigorated me towards trying to climb my way towards more definitive goals to improve my quality of life while working with a pain management specialist.
So it might be a bit disheartening at first, but consider giving this chart a glance to see where you fall, if only for your own knowledge or maybe it can be a useful tool to better describe your situation to your doctors.
Here is the full flyer: https://www.theacpa.org/uploads/documents/Life_Scale_3.pdf
A better pain chart...
Well... you know... sometimes it just makes more sense this way...
Originally from: http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html
Seriously, if you have not read any of their posts, go spend an afternoon reading a few. So much love for Hyperbole and a Half....
Seriously, if you have not read any of their posts, go spend an afternoon reading a few. So much love for Hyperbole and a Half....
GBS - Ketamine Therapy
I am going to try and post my ketamine experience up here soon.
In the meantime, if you got a ketamine zine at the symposium and have questions,
please don't hesitate to reach out to me at: turnerstokens@gmail.com.
Please use "GBS/CIDP" in the subject of e-mails so I know it isn't a junk email.
Thanks!
In the meantime, if you got a ketamine zine at the symposium and have questions,
please don't hesitate to reach out to me at: turnerstokens@gmail.com.
Please use "GBS/CIDP" in the subject of e-mails so I know it isn't a junk email.
Thanks!
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.
Wednesday, May 11, 2016
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:
Tuesday, November 17, 2015
Gears & Beers: Austin, TX
The turnout was a little smaller tonight for Gear and Beers but the conversation was full! Quite a few new faces that are hungry for more Austin steampunk events! If you are new, make sure to keep an eye on what Argo is up to! Got to hear about a new steampunk LARP being formed and play tested called Clockwork Souls (if I remember right...) and we even had some new faces that just moved here from New Jersey!
Sam Tyler made it out for one last Austin steampunk hurrah before her big move. <3 nbsp="" p="">Good conversation, great new faces and some mighty yummy cider.
It was a good night~ <3 nbsp="" p="">Over the next few weeks I am going to be sorting through my stash of goodies and am considering doing a sale through Facebook. I just need to figure out a good way to make it go smooth but I think I have an idea on how to make it all work. As always, if you spotted something at and event and it is still on your mind, please don't hesitate to reach out and I can see if I still have it in stock. While many of my pieces are one offs, sometimes I can recreate or at least come close to recreating pieces.
Eyes to the skies and safe travels to everyone this holiday season!
Sam Tyler made it out for one last Austin steampunk hurrah before her big move. <3 nbsp="" p="">Good conversation, great new faces and some mighty yummy cider.
It was a good night~ <3 nbsp="" p="">Over the next few weeks I am going to be sorting through my stash of goodies and am considering doing a sale through Facebook. I just need to figure out a good way to make it go smooth but I think I have an idea on how to make it all work. As always, if you spotted something at and event and it is still on your mind, please don't hesitate to reach out and I can see if I still have it in stock. While many of my pieces are one offs, sometimes I can recreate or at least come close to recreating pieces.
Eyes to the skies and safe travels to everyone this holiday season!
Sunday, November 8, 2015
Monday, October 26, 2015
XD Busy days are busy!
It has been a whirlwind of the past few days and can't wait to post some shots from the GBS Walk and Roll in Houston and my mini adventure checking out the Cave Without A Name in Boerne, TX.
Stay tuned for updates!
Stay tuned for updates!
Wednesday, July 1, 2015
Patriot Advertising Internships Now Open
KATY/HOUSTON, TX: Interviews Starting Now for Paid Internships! Are you or someone you know interested in joining an advertising company where you can experience a bit of everything? Send resume to lisa@patriotadvertising.com by July 10th. Please don't hesitate to e-mail questions! Experience with Adobe Creative Suite preferred. College Degree Related to Graphic Design, Advertising, Marketing or Mass Communications preferred but not required. EOE
Monday, June 1, 2015
Kusmi Tea Review: Prince Vladimir
Recently I hit up a Dean & DeLuca in Washington, D.C. and I stumbled across Kusmi tea. They had quite an array of flavors to choose from but in the end I decided to just grab a sampler pack and then buy larger packs once I narrowed down my favorites.
It is rare that I stumble across a tea that makes me fall in love with it from the first sip... This is one of those teas. It was a warm mellow mix of citrus vanilla and spice. It was a really lovely surprise of a flavor and is definitely one I plan on buying a box of (I promise, not every flavor is going to be this way, it just hit home runs with the first two I tried...)
A blend of Earl Grey, citrus fruits, vanilla and spices, Prince Vladimir is one of the company's musts. We suggest to enjoy this tea during the whole day. Main flavor: Smooth citrus and spice Ingredients: Russian blend of black China teas with scents of bergamot, lemon, grapefruit, vanilla and spices
Kusmi Tea Review: Be Cool
Recently I hit up a Dean & DeLuca in Washington, D.C. and I stumbled across Kusmi tea. They had quite an array of flavors to choose from but in the end I decided to just grab a sampler pack and then buy larger packs once I narrowed down my favorites.
First up is BE COOL, a mellow blend of liquorice and peppermint that is caffeine free. I had originally been hunting for a good bed time tea and almost grabbed a box of this alone but I wasn't sure what to expect from the liquorice flavor. I was pleasantly surprised with a mellow but warming blend that didn't try to overpower your taste buds.
This is definitely one that I will be buying a box of once I work my way through the samples!
Wednesday, April 29, 2015
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