Chw's Tailbone Relief Cause
Donation protected
My name is Shannon Joiner, many of you know me as Chw. I have been battling constant chronic tailbone pain for 5 years now. I have tried every injection that is related to tailbone/lower back issues, physical therapy, Acupunture and have seen almost every doctor I can about this issue, with no relief. My current doctor has one last option that could help me get this to a manageable level and help me get back to living a somewhat "normal" life. My other option of going to the Mayo Clinic is still on the table, but their spine center will not accept new patients. I am still looking for another way in.
For those that know me, know that I do not like to ask for help. I am very outgoing and will do everything that I can for others in need. I have helped both raise money for and find grants for local non-profits the last couple of years through BWBGA, as well as help foster our local community here in GA. I have tried everything in my power to beat this with the resources that I have, as well as (a lot of) help from my dad and my incredible girlfriend Jennifer has helped in more ways than I can count.
The last viable option I have is to try a spinal stimulator and see if it will help break the pain signal going to my brain. It starts out with a trial procedure and if it works then they will do a full install of the stimulator (all under my skin) so that I can turn it on when the pain hits. I have even gotten special insurance to help cap the costs that this trial procedure and the full procedure, if the trail works. My out of pocket cap is around $7,000 per year. That is why my plan of getting this trial done in the first of the year, so if it works I can go straight in and get it permanently installed and my insurance will cover the $20-$60k procedure. Should I raise more than my goal, then it will be used to offset the mountain of medical bills that have accumulated over the past 5 years that I have estimated I will be paying off for the next 30+ years.
I need to get this done ASAP due to being in an appeal with Disability who are trying to cut me off due to being on for 2 years and claiming that I can do some type of work. Even though I have attempted to work, each time I have been quickly reminded on how limited my abilities are from this chronic pain, usually by or during the interview process.
I have been extremely lucky in my life. I have a great girlfriend, Jen, who has been beside me through all of this medical stuff and continues to be supportive of me and my issue. Both of my parents have done everything they can and have been extremely supportive through these times and my little sister is very supportive and a great friend. I have many friends, more than most and I count myself lucky to have such great people in my life. I am a natural networker, I am not sure when it happened (after high school), but it has been a gift that I am honored to have as it has helped me in my professional career, my personal life as well as my current medical situation.
I am grateful everyday that I wake up and feel the pain. I would rather be in pain, than not be here to feel anything at all. But I would much rather be working than going through what I am going through, but I do feel like I will have my chance to shine again, as I find a way to make this manageable and get back on my feet.
I have been working on Art, in the times that I feel well enough to do so. Most projects end up taking me weeks if not longer to start & finish due to having to put it down and go lay back down for the rest of the day once I start feeling like I have over done it. Most of them shouldn't take more than an couple of hours... but I can't control how/when the pain will become unbearable. I use Art as therapy, both physical and emotional.
I thank you in advance for reading this or giving what you can. Any contribution is greatly appreciated, from giving a dollar or more or even sharing it with your network of people, to try and help this get exposure. I am truly thankful for all of those who have been supporting me via social media, phone calls and coming to see me since this happened. If you can give anything it will help me get this trial surgery done and hopefully help me get back on my feet.
Below is a little more history of what I have been through and what I have been doing over the past 5 years to try and find a solution to my issues.
*****
In Nov of 2010, I went in to the doctor to have a colonoscopy, after having heat related dehydration from my last job working on rooftops (in the summer of 2010) and have been in constant pain and have not walked right since. I had some really bad luck with a doctor that (I found out later) had really messed up a number of his patients after doing routine procedures on them. PLEASE - look at reviews of the doctor performing your procedure before you get it, just in case! After my colonoscopy, it took 5 rectal surgeons to properly diagnose me with Levator AVI syndrome (the locking up of your pelvic floor muscles).
At that time, I had gone from being 150lbs down to 110lbs (+/-), not being able to eat due to the pain so I started to see an Acupuncturist, in April of 2011, as it had become obvious that western medicine (or the lack there of) was going to kill me. The acupuncturist was able to put needles directly into the muscles, hook a TENS unit up to them and that shock treatment was able to get the muscles to lay down again and relax. Unfortunately, it was 6 months after the issue started and I was left with an almost constant tailbone pain that no doctor could explain.
We did X-ray's, MRI's, pill cams and all the tests they could think of to try to figure out why. A cyst was found, just above my tailbone, on my sacrum where it meets my tailbone, that every doctor I talked to claimed that it had "nothing to do with my unknown tailbone pain". Hard to believe. Especially since my acupuncturist, chiropractor and one doc, who was not in the spinal field all had told me that the area where my pain came from, lined up exactly to where this cyst (on the gut side) on/near my tailbone was.
I had to take a leave of absence from work in Dec 2010 and never was able to return. I was finally let go in Aug of 2011 as we all knew I was not going to be able to continue doing my job as a Project Manager for a Telecom company, running the crew that programmed and pointed the dishes at each other for the Clear 4G network on cell towers and rooftops here in Atlanta.
GA Law protected the doctor who did this to me and I was not able to hold him accountable for the injury he had done to me. I had finally found a lawyer willing to take the case who was out of state, but it was already past the 2 year statute of limitations limit.
I continue to fight and try to find a doctor that can help and have even tried finding a doctor that would go in and remove the cyst, with no luck. No one wants to touch it as they say that it shouldn't have any effect on me, but my pain levels disagree. My main triggers are going to the bathroom, which is something that wakes me up each morning. So even on my best days, once I go to the bathroom, all bets are off and I am usually having to lay with my legs propped over the arm of the couch in order to get as much pressure off of that area as I possibly can.
Over the past 5 years, we have tried 5-6 localized injections, physical therapy, deep tissue massage, chiropractic, Reiki (energy work) and Acupuncture. The Acupuncture (and the Reiki to a certain extent) helped the most, but it helped more with my secondary issues than it did with my pain. Now I can't even afford to do the Acupuncture anymore, due to the cost and trying to survive each month living off of disability.
Thank you again for taking the time to read and help in whatever way you can! I cannot express the gratitude I will have to be able to get this procedure done and start rebuilding my life! I hope you have a great day!
For those that know me, know that I do not like to ask for help. I am very outgoing and will do everything that I can for others in need. I have helped both raise money for and find grants for local non-profits the last couple of years through BWBGA, as well as help foster our local community here in GA. I have tried everything in my power to beat this with the resources that I have, as well as (a lot of) help from my dad and my incredible girlfriend Jennifer has helped in more ways than I can count.
The last viable option I have is to try a spinal stimulator and see if it will help break the pain signal going to my brain. It starts out with a trial procedure and if it works then they will do a full install of the stimulator (all under my skin) so that I can turn it on when the pain hits. I have even gotten special insurance to help cap the costs that this trial procedure and the full procedure, if the trail works. My out of pocket cap is around $7,000 per year. That is why my plan of getting this trial done in the first of the year, so if it works I can go straight in and get it permanently installed and my insurance will cover the $20-$60k procedure. Should I raise more than my goal, then it will be used to offset the mountain of medical bills that have accumulated over the past 5 years that I have estimated I will be paying off for the next 30+ years.
I need to get this done ASAP due to being in an appeal with Disability who are trying to cut me off due to being on for 2 years and claiming that I can do some type of work. Even though I have attempted to work, each time I have been quickly reminded on how limited my abilities are from this chronic pain, usually by or during the interview process.
I have been extremely lucky in my life. I have a great girlfriend, Jen, who has been beside me through all of this medical stuff and continues to be supportive of me and my issue. Both of my parents have done everything they can and have been extremely supportive through these times and my little sister is very supportive and a great friend. I have many friends, more than most and I count myself lucky to have such great people in my life. I am a natural networker, I am not sure when it happened (after high school), but it has been a gift that I am honored to have as it has helped me in my professional career, my personal life as well as my current medical situation.
I am grateful everyday that I wake up and feel the pain. I would rather be in pain, than not be here to feel anything at all. But I would much rather be working than going through what I am going through, but I do feel like I will have my chance to shine again, as I find a way to make this manageable and get back on my feet.
I have been working on Art, in the times that I feel well enough to do so. Most projects end up taking me weeks if not longer to start & finish due to having to put it down and go lay back down for the rest of the day once I start feeling like I have over done it. Most of them shouldn't take more than an couple of hours... but I can't control how/when the pain will become unbearable. I use Art as therapy, both physical and emotional.
I thank you in advance for reading this or giving what you can. Any contribution is greatly appreciated, from giving a dollar or more or even sharing it with your network of people, to try and help this get exposure. I am truly thankful for all of those who have been supporting me via social media, phone calls and coming to see me since this happened. If you can give anything it will help me get this trial surgery done and hopefully help me get back on my feet.
Below is a little more history of what I have been through and what I have been doing over the past 5 years to try and find a solution to my issues.
*****
In Nov of 2010, I went in to the doctor to have a colonoscopy, after having heat related dehydration from my last job working on rooftops (in the summer of 2010) and have been in constant pain and have not walked right since. I had some really bad luck with a doctor that (I found out later) had really messed up a number of his patients after doing routine procedures on them. PLEASE - look at reviews of the doctor performing your procedure before you get it, just in case! After my colonoscopy, it took 5 rectal surgeons to properly diagnose me with Levator AVI syndrome (the locking up of your pelvic floor muscles).
At that time, I had gone from being 150lbs down to 110lbs (+/-), not being able to eat due to the pain so I started to see an Acupuncturist, in April of 2011, as it had become obvious that western medicine (or the lack there of) was going to kill me. The acupuncturist was able to put needles directly into the muscles, hook a TENS unit up to them and that shock treatment was able to get the muscles to lay down again and relax. Unfortunately, it was 6 months after the issue started and I was left with an almost constant tailbone pain that no doctor could explain.
We did X-ray's, MRI's, pill cams and all the tests they could think of to try to figure out why. A cyst was found, just above my tailbone, on my sacrum where it meets my tailbone, that every doctor I talked to claimed that it had "nothing to do with my unknown tailbone pain". Hard to believe. Especially since my acupuncturist, chiropractor and one doc, who was not in the spinal field all had told me that the area where my pain came from, lined up exactly to where this cyst (on the gut side) on/near my tailbone was.
I had to take a leave of absence from work in Dec 2010 and never was able to return. I was finally let go in Aug of 2011 as we all knew I was not going to be able to continue doing my job as a Project Manager for a Telecom company, running the crew that programmed and pointed the dishes at each other for the Clear 4G network on cell towers and rooftops here in Atlanta.
GA Law protected the doctor who did this to me and I was not able to hold him accountable for the injury he had done to me. I had finally found a lawyer willing to take the case who was out of state, but it was already past the 2 year statute of limitations limit.
I continue to fight and try to find a doctor that can help and have even tried finding a doctor that would go in and remove the cyst, with no luck. No one wants to touch it as they say that it shouldn't have any effect on me, but my pain levels disagree. My main triggers are going to the bathroom, which is something that wakes me up each morning. So even on my best days, once I go to the bathroom, all bets are off and I am usually having to lay with my legs propped over the arm of the couch in order to get as much pressure off of that area as I possibly can.
Over the past 5 years, we have tried 5-6 localized injections, physical therapy, deep tissue massage, chiropractic, Reiki (energy work) and Acupuncture. The Acupuncture (and the Reiki to a certain extent) helped the most, but it helped more with my secondary issues than it did with my pain. Now I can't even afford to do the Acupuncture anymore, due to the cost and trying to survive each month living off of disability.
Thank you again for taking the time to read and help in whatever way you can! I cannot express the gratitude I will have to be able to get this procedure done and start rebuilding my life! I hope you have a great day!
Organizer
Shannon Chw Joiner
Organizer
Atlanta, GA