After being pain free in September, maintaining a good diet and continuing to workout and listen to my body, when I need to rest, when I can push through, I pushed to not have a treatment as long as possible. Having been an elite athlete throughout my childhood and young adolescences I have great body awareness but one key to maintaining and controlling my pain had been becoming even more aware of my body. Understanding what I am feeling and how my body responds to stimulus and the amount of rest and recovery I need.
I had another treatment in the beginning of October, I went pain free for 3 weeks compared to the initial 2 weeks in September. I had another treatment 5 weeks later in mid November and went nearly a month without pain. I was able to travel to Boston without much issue, although the snow and cold proved that I still have aches and mild pain, it was no where near what I had been feeling. I was able to hold a squeeze my nephew at Thanksgiving and chase him around. After traveling and working a non-profit event for the Power of Pain Foundation just before leaving for Boston when I came home I was able to make it 3 more weeks into December without a treatment. At that point the center was instating pain protocols and it was time to begin the road to remission. I made it 7 weeks from December to my February treatment.
Entering treatment in February 2015, infusion number 14, my pain levels were a 10 out of 10, I had not been in that much pain in awhile. Reason being, I had started seeing a sports therapist who began working on breaking down the scar tissue that was left in my shoulder and neck that was left from surgery in 2010 and slowly working my ribs back into place. After the Thoracic Outlet Surgery in December 2010, my ribs were not put back in place and the scar tissue had developed around them and them muscles tightened where they should not have. My ribs would slip and move causing pain but I was getting use to the feeling and trying to ignore it. The sports therapist began breaking down the scar tissue and the loosening the muscles and pushing the ribs slowly back to position. Out of the 4 needing moved 1 is going back into place, it holds for about 2 weeks and I work on strengthening the muscles around it. It will be slow progress but I am feeling better. After the initial treatments, pain levels were high, but after treatment they came back to a zero. I had another therapy treatment a week later and I am still pain free for the most part.
As I have mentioned before, the weather effects my pain, it is manageable and tolerable but rain and cold makes me ache and throb. It is temporary and I just work through it. Rest when I need and keep moving when I can. My journey to remission continues but where things stand today, I am happier than ever, anxiety and depression are not an issue and my pain is slowly going away. Remission here I come.
Monday, March 2, 2015
Riding the Ketamine Train to Life
I initially entered Ketamine therapy to stabilize my mental state after coming down off of heavy medications that had many contraindications but the center was also aware of my diagnosis of RSD/CRPS and that Ketamine was being used for RSD treatment. Although they were not doing pain protocols, I was continuing my treatment for the depression and anxiety. After the 8th Ketamine infusion over the summer of 2014 I was thinking clearer than I had ever thought and the anxiety had subsided. I was confident enough that I was ready to try to get back in the pool after 4 years of being out and away.
I did the initial 5 infusions within 3 weeks of starting in March and then was going once every 4 weeks after. My mom was noticing incredible changes with me and dealing and coping with issues that were occurring and the legal issues I was having to work through. Before the ketamine I would not have been abled to manage myself or my emotions as I was at the time, I was able to have conversations and express myself without falling apart and when I had anxiety attacks they were not lasting as long or as over the top and over emotional as they had been. It felt good for the first time to feel as good as I was, and the pain levels were tolerable. The Ketamine was working, it was actually working and there were no side effects of it. The most I dealt with was a slight headache. I didn't have to take anything everyday and I did not feel like I was up and down every other day. I felt good.
In June, I was hit with heartbreak, my childhood idol and mentor was nearly killed, Amy Van Dyken-Rouen, Olympic Gold Medalist, was an a severe, nearly fatal ATV accident. I grew up wanting to be just like her. She was told she would never make it, she was asked when she got to the Olympics after one event if she wanted to go home, she has asthma, she has shoulder surgeries, but she was the underdog to the top dog. Now she is fighting for her life and was paralyzed from the waist down. Amy's attitude and drive after the accident made me realize, I have that drive in me. Amy is bound and determine to walk regardless of what doctors tell her. She was out of the hospital sooner than most and she is learning to walk again. She doesn't let anyone tell her she can't do something. This made me realize that I am finally getting treatment and feeling better, no more excuses, get back in the pool, get back to living! Just because I have RSD does not mean I cannot live my life, it means I have to learn to cope and overcome and not let anyone tell me I can't! Immediately following Amy leaving for Colorado for rehab, I headed to the local gym, got a membership and a trainer and began my journey back to life.
In July, my life was struck with tragedy and more heartbreak, I received a call that my best friend's husband had committed suicide. So many emotions went through me and I knew I had to continue to advocate and fight for life. They had been together for almost 11 years and been married only a couple. No one knew anything was wrong, he was the funniest, most caring man and he treated my best friend like a queen, he loved her and she loved him, it was obvious in their faces. He was gone, why I am here, why him, why not me? Then I realized, I got help, I reached out, I wanted to survive and I wanted to help others. It was time to focus on the positive, focus on managing the pain and push through it.
It was painful and definitely not easy. Although I had reached the limits with the Ketamine on the depression end, the center was continuing to treat me each month on the depression level protocol to help maintain the pain. When pain is high, you become depressed when you are depressed the pain is higher so we were hoping to keep the pain controlled and tolerable so I did not relapse with the depression. Although the workouts hurt and there was good pain and bad pain I kept pushing.
On my 11th treatment in September on 2014, I walked out with a pain level of 0 for the first time in nearly 5 years since the accident. I had not had a day without some sort of pain until then. There were days where pain was higher and days where is was more manageable but for the first time I was celebrating, I felt no pain! It was now about how long will this last. I knew I could not stop working out due to fear of being in pain again, I had to see what my body was going to do. I was careful, I was not lifting heavy weights but I had to maintain a routine to see how long the ketamine would keep me pain free and how high the pain levels would reach. This is where the journey to pain free living begins. I had already gone gluten free, casein free, and almost completely dairy free. I was told when I was in New Jersey they gluten and dairy caused inflammation and that it would be key to maintaining my pain levels. I still had weight to gain. I weight 95 pounds at this point and if I was going to continue to workout and have success I had to get on the right track. A chose a new path for a new life.
I did the initial 5 infusions within 3 weeks of starting in March and then was going once every 4 weeks after. My mom was noticing incredible changes with me and dealing and coping with issues that were occurring and the legal issues I was having to work through. Before the ketamine I would not have been abled to manage myself or my emotions as I was at the time, I was able to have conversations and express myself without falling apart and when I had anxiety attacks they were not lasting as long or as over the top and over emotional as they had been. It felt good for the first time to feel as good as I was, and the pain levels were tolerable. The Ketamine was working, it was actually working and there were no side effects of it. The most I dealt with was a slight headache. I didn't have to take anything everyday and I did not feel like I was up and down every other day. I felt good.
In June, I was hit with heartbreak, my childhood idol and mentor was nearly killed, Amy Van Dyken-Rouen, Olympic Gold Medalist, was an a severe, nearly fatal ATV accident. I grew up wanting to be just like her. She was told she would never make it, she was asked when she got to the Olympics after one event if she wanted to go home, she has asthma, she has shoulder surgeries, but she was the underdog to the top dog. Now she is fighting for her life and was paralyzed from the waist down. Amy's attitude and drive after the accident made me realize, I have that drive in me. Amy is bound and determine to walk regardless of what doctors tell her. She was out of the hospital sooner than most and she is learning to walk again. She doesn't let anyone tell her she can't do something. This made me realize that I am finally getting treatment and feeling better, no more excuses, get back in the pool, get back to living! Just because I have RSD does not mean I cannot live my life, it means I have to learn to cope and overcome and not let anyone tell me I can't! Immediately following Amy leaving for Colorado for rehab, I headed to the local gym, got a membership and a trainer and began my journey back to life.
In July, my life was struck with tragedy and more heartbreak, I received a call that my best friend's husband had committed suicide. So many emotions went through me and I knew I had to continue to advocate and fight for life. They had been together for almost 11 years and been married only a couple. No one knew anything was wrong, he was the funniest, most caring man and he treated my best friend like a queen, he loved her and she loved him, it was obvious in their faces. He was gone, why I am here, why him, why not me? Then I realized, I got help, I reached out, I wanted to survive and I wanted to help others. It was time to focus on the positive, focus on managing the pain and push through it.
It was painful and definitely not easy. Although I had reached the limits with the Ketamine on the depression end, the center was continuing to treat me each month on the depression level protocol to help maintain the pain. When pain is high, you become depressed when you are depressed the pain is higher so we were hoping to keep the pain controlled and tolerable so I did not relapse with the depression. Although the workouts hurt and there was good pain and bad pain I kept pushing.
On my 11th treatment in September on 2014, I walked out with a pain level of 0 for the first time in nearly 5 years since the accident. I had not had a day without some sort of pain until then. There were days where pain was higher and days where is was more manageable but for the first time I was celebrating, I felt no pain! It was now about how long will this last. I knew I could not stop working out due to fear of being in pain again, I had to see what my body was going to do. I was careful, I was not lifting heavy weights but I had to maintain a routine to see how long the ketamine would keep me pain free and how high the pain levels would reach. This is where the journey to pain free living begins. I had already gone gluten free, casein free, and almost completely dairy free. I was told when I was in New Jersey they gluten and dairy caused inflammation and that it would be key to maintaining my pain levels. I still had weight to gain. I weight 95 pounds at this point and if I was going to continue to workout and have success I had to get on the right track. A chose a new path for a new life.
Ketamine Saved Me!
I still do not know what made me stop. My boyfriend at the time made me spit what I had not swallowed out and threw the pills out. There was an acquaintance in town that said he was here to help me because of the issues with the Naltrexone I was having, but once again, hindsight, he was here for selfish reasons. My now ex walked away, handed the pills and medications that I had not hidden to the acquaintance and told him to deal with me. I had already called Barby and told her what had happened and begged for helped. Within a few days I was at Arizona Depression Recovery in Scottsdale. The acquaintance I am thankful for, he paid for the first 6 ketamine infusions which helped stabilize my condition. But it was not without some struggle. I felt better after the initial infusion, anxiety was not as high but still there and I knew I still had a hill to climb to feeling better.
The Backstory:
Besides the things I have discussed in my previous entries, there are several things I have failed to mention that I have overcome during all of this and to understand what has happened since I need to back up a little. The guy I met in May of 2009, I was with during this entire journey up to this point, but he was mentally, emotionally, and verbally abusive. So was his mother. They are the ones that took me out of the hospital in May of 2010 after coming off the medications, they just believed that I needed to get out of my own head that I was not crazy, that my mom was nuts for even putting me on the meds. This made me estranged from my mom and the relationship was extremely strained with her. I was not thinking clearly or for myself. After the accident and the surgery, my now ex was not there, he was always gone and only wanted to party. I felt like it was my fault for being sick, I felt like I was driving him to his behavior. When I left for La Jolla, I had received my settlement from insurance for the accident, I spent over half of it paying for us to live in La Jolla in a nice area and he chose to leave because he had to pay for his truck and truck insurance. He got angry, he wanted a free ride, but when he did show up in La Jolla for a weekend, he did nothing to help me, if I had appointments he dropped me off, went home and slept, he wouldn't walk the dogs or take them to go to the bathroom. All he wanted to do was sleep, party with his friend and do what he wanted when he wanted. He felt entitled because he chose to go back to Arizona to work so he felt it was his mini vacation. I so wanted to the relationship to work I let him blame. He was constantly on me about the clothes I wore, the color and way I did my hair and how I talked. So much was going on I was blind to what he was doing. At the same time, my mom saw it and couldn't handle it and it cause that relationship to be severely strained. When I came home all my ex wanted to do was party, stay out all night and no matter what I was lame, I was awful if I wanted to go home and he would never leave he had to be the last to leave. He also had an issue with drugs and alcohol. I tried to get him to stop, I couldn't do them or keep up nor did I want to and he hated that.
To Continue:
This is where things continue. After the suicide attempt things with my ex and I were distant. I was running the books for his company and had received a part time job for a friend of ours with a several businesses here doing administrative work. It still was not enough for ex. He wanted more from me even though I had not been on my feet long and was still dealing with managing the chronic pain and learning how to live. Just after the 5th treatment in April of 2014, he asked me to leave, I tried and things blew up in my face. I won't go into details for legal reasons but although going through that day and the issues after the fact were not easy, it was the best thing to happen to me. I moved back in with my mom and continued monthly with my Ketamine treatments. Life started to really change for me. Things were completely turning a different corner.
The Backstory:
Besides the things I have discussed in my previous entries, there are several things I have failed to mention that I have overcome during all of this and to understand what has happened since I need to back up a little. The guy I met in May of 2009, I was with during this entire journey up to this point, but he was mentally, emotionally, and verbally abusive. So was his mother. They are the ones that took me out of the hospital in May of 2010 after coming off the medications, they just believed that I needed to get out of my own head that I was not crazy, that my mom was nuts for even putting me on the meds. This made me estranged from my mom and the relationship was extremely strained with her. I was not thinking clearly or for myself. After the accident and the surgery, my now ex was not there, he was always gone and only wanted to party. I felt like it was my fault for being sick, I felt like I was driving him to his behavior. When I left for La Jolla, I had received my settlement from insurance for the accident, I spent over half of it paying for us to live in La Jolla in a nice area and he chose to leave because he had to pay for his truck and truck insurance. He got angry, he wanted a free ride, but when he did show up in La Jolla for a weekend, he did nothing to help me, if I had appointments he dropped me off, went home and slept, he wouldn't walk the dogs or take them to go to the bathroom. All he wanted to do was sleep, party with his friend and do what he wanted when he wanted. He felt entitled because he chose to go back to Arizona to work so he felt it was his mini vacation. I so wanted to the relationship to work I let him blame. He was constantly on me about the clothes I wore, the color and way I did my hair and how I talked. So much was going on I was blind to what he was doing. At the same time, my mom saw it and couldn't handle it and it cause that relationship to be severely strained. When I came home all my ex wanted to do was party, stay out all night and no matter what I was lame, I was awful if I wanted to go home and he would never leave he had to be the last to leave. He also had an issue with drugs and alcohol. I tried to get him to stop, I couldn't do them or keep up nor did I want to and he hated that.
To Continue:
This is where things continue. After the suicide attempt things with my ex and I were distant. I was running the books for his company and had received a part time job for a friend of ours with a several businesses here doing administrative work. It still was not enough for ex. He wanted more from me even though I had not been on my feet long and was still dealing with managing the chronic pain and learning how to live. Just after the 5th treatment in April of 2014, he asked me to leave, I tried and things blew up in my face. I won't go into details for legal reasons but although going through that day and the issues after the fact were not easy, it was the best thing to happen to me. I moved back in with my mom and continued monthly with my Ketamine treatments. Life started to really change for me. Things were completely turning a different corner.
The Sprial Down
After linking with Barby Ingle and the Power of Pain Foundation, I began an new journey. Barby was a supporter and advocate for Ketamine Infusion Therapy. I learned that the medications I had been on had contraindications from each other and were all fighting against each other. There was also a huge debate of the Naltrexone and the use of it in CRPS/RSD patients. Barby pointed me in the direction of well know RSD physician and diagnostician Dr. Phillip Getson. Dr. Getson is in my hometown of Marlton, New Jersey, and after all I had been through, it was a last hope for help. Head to ketamine and see Dr. Getson. November 05, 2013 I was on a plane headed to New Jersey to see Dr. Getson. My dad was there with me and despite the pain and all the failed attempts at treatment I was keeping hopeful that he could help. On November 07, 2013 Dr. Getson confirmed the RSD diagnosis and did my pre-ketamine evaluation. It gave me new hope, the only issue now was financially figuring out how to get me the treatment. Being another off label use, treatment is expensive and to do it in New Jersey as the protocol required would cost a lot of money and time. We had an answer and a treatment path, it was just getting there.
When I returned home, I began doing more volunteer work with the Power of Pain Foundation, talking about my journey with Thoracic Outlet to RSD. During this time I was really struggling with the depression, anxiety and suicidal ideation. I continued to be open with Barby and she became a big sister and a best friend. She expressed her extreme concern for me having been on Naltrexone. She knew of other patients who had had issues and even committed suicide as a result of taking the drug. I began doing my research.
Naltrexone in its approved FDA form is a drug used as a last resort for alcoholics and narcotic and opiate abusers who have tried rehab and have not been successful. The drug alters the brain chemistry and makes the patient unable to drink or use opiates and narcotics without making them violently ill. It is being used in low-dose 4 mg or less in patients with RSD/CRSP, Fibromyalgia, MS, ALS, and several other neurologically based diseases. I was on 15mg a day and went off without titrating down correctly because I could not get treatment. We knew at the point I was at that this was the cause of my mental and emotionally spiral down. Naltrexone in its prescribed form is rarely used because of its high rate of suicide and inability to be effective. There is also no extent of medical research showing in such low doses, its a successful treatment or part of treatment protocol for neurological disorders. I knew I had chosen to be a research guinea pig, I lead to believe CRPS/RSD was so rare that there was little choice but to try what I could. Being in the pain I was in, I was desperate. Looking back, as hindsight is, I wish I had really done my research before trying the drug protocol. But we cannot live with regret. We can only learn and teach others not to make the same mistakes.
As I learned more, I continued to struggle with emotional and mental spirals. There was more than one occasion in which I wanted to die. I did not know what else to do, between the pain and the lack of access to treatment and care I was not coping. To make it worse, I did not have support my from my now ex-boyfriend or his family. They did not believe the diagnosis or the issues I faced. It was suck it up and get back to life and they also never recognized my previous mental illness of depression. I was fighting a vicious circle.
Working with the foundation and with Barby gave me hope and kept me moving forward. There was hope, there was ketamine, it was getting to it that had to happen. But, it was going to happen. By March 07, 2014 the spiral had hit an all time low. After being desperate for Ketamine, and everything else in the past, the come down off the list of medications, I hit rock bottom. That night after drinking non-stop trying to numb everything. I tried to swallow a handful of medications that I did have left from California along with using a lot of the nasal ketamine. I wanted to die.
When I returned home, I began doing more volunteer work with the Power of Pain Foundation, talking about my journey with Thoracic Outlet to RSD. During this time I was really struggling with the depression, anxiety and suicidal ideation. I continued to be open with Barby and she became a big sister and a best friend. She expressed her extreme concern for me having been on Naltrexone. She knew of other patients who had had issues and even committed suicide as a result of taking the drug. I began doing my research.
Naltrexone in its approved FDA form is a drug used as a last resort for alcoholics and narcotic and opiate abusers who have tried rehab and have not been successful. The drug alters the brain chemistry and makes the patient unable to drink or use opiates and narcotics without making them violently ill. It is being used in low-dose 4 mg or less in patients with RSD/CRSP, Fibromyalgia, MS, ALS, and several other neurologically based diseases. I was on 15mg a day and went off without titrating down correctly because I could not get treatment. We knew at the point I was at that this was the cause of my mental and emotionally spiral down. Naltrexone in its prescribed form is rarely used because of its high rate of suicide and inability to be effective. There is also no extent of medical research showing in such low doses, its a successful treatment or part of treatment protocol for neurological disorders. I knew I had chosen to be a research guinea pig, I lead to believe CRPS/RSD was so rare that there was little choice but to try what I could. Being in the pain I was in, I was desperate. Looking back, as hindsight is, I wish I had really done my research before trying the drug protocol. But we cannot live with regret. We can only learn and teach others not to make the same mistakes.
As I learned more, I continued to struggle with emotional and mental spirals. There was more than one occasion in which I wanted to die. I did not know what else to do, between the pain and the lack of access to treatment and care I was not coping. To make it worse, I did not have support my from my now ex-boyfriend or his family. They did not believe the diagnosis or the issues I faced. It was suck it up and get back to life and they also never recognized my previous mental illness of depression. I was fighting a vicious circle.
Working with the foundation and with Barby gave me hope and kept me moving forward. There was hope, there was ketamine, it was getting to it that had to happen. But, it was going to happen. By March 07, 2014 the spiral had hit an all time low. After being desperate for Ketamine, and everything else in the past, the come down off the list of medications, I hit rock bottom. That night after drinking non-stop trying to numb everything. I tried to swallow a handful of medications that I did have left from California along with using a lot of the nasal ketamine. I wanted to die.
Journey To Help To Hell - The Spiral Begins
After my surgery for Thoracic Outlet Syndrome, I was released December 22, 2010 from care. I asked for Physical Therapy but was denied and told that I should recover just fine. I tried to return to my job as a swim coach for a local USA Swim Team just before the new year but it proved to be defeating. The pain was no better and I still could not move my left arm. All I was hoping and wanting was to get back to my life. By April 2011 I had to remove myself from my dream job as a coach and walk away to try and gain control of my pain and to ensure I completed school. Despite surgery and the pain, I continued to work towards my college degree. I was determined to finish. I graduated from Arizona State University in May of 2011. I was lucky, my professors understood my situation and I did not have to carry my books around to class and they made sure that I was able to be as comfortable in lecture as possible, even if it meant standing and getting help with notes from class mates and spending additional time with me making sure I had the notes I needed. I was even granted corrections on papers because they knew I could not feel my fingers on my left hand and was making certain accidental errors, as much as I tried to edit, I still missed here and there. I was lucky they understood and were so willing to help. I was still out work and getting bored. I was trying everything I could to maintain a normal life but the pain was not changing and I was losing mobility once again. This then made me depressed once again. I even tried self rehabilitation, having been a swimmer and having minor injuries from overworking, I had some idea of rehab and tried but was not succeeding.
By July of 2011, when I arrived in Boston for my brother's wedding, I weighed less than 95 pounds and was struggling. Everyone knew I was not well but it was not a time to deal with it, it was my brothers wedding. Shortly after the wedding my dad contacted me and asked me what was really going on. He and I had never been close and it was an estranged relationship but he knew his little girl was not doing well after the surgery. I had also lost my health insurance because I graduated and did not have a job with insurance. My dad and I spent the next 8 months fighting to get me help. No one in Arizona would lay a hand on me medically. They either were not familiar with the Thoracic Outlet or did not want to treat me because of the risk of malpractice because of the surgery and not having surgical after care. After contacting doctors and programs across the country it came down to two options. By April of 2012 I was barely walking and was hunched in fetal position most of the time. It was my choice, either John Hopkins in Baltimore, Maryland or UCSD in La Jolla, California. Although my dad had the ability to get on a plane at anytime and get to me if needed, I did not feel comfortable being so far from home if something happen, so I chose to go to UCSD. Still today I question if it was the right decision, but those I questions we cannot answer or even think about, it will only set me back.
After speaking with the doctors, getting my records ready, I was accepting to the UCSD research program on June 20, 2012 and arrived on June 22, 2012 for a chance to get my life back. I was part of their Thoracic Outlet research program and was hoping they would help me. It began with a ton of tests and ct scans, MRI's and x-rays and then began a pain management protocol. I had already tried both Gabapentin and Neurontin prior to surgery with no success, they only made me feel out of control and unable to function with no relief of the pain. I was put on anti-convulsants, I tried medications for osteoporosis which were also being used off label for nerve pain. Neither worked. They tried doing a nerve block where they went in through the front of my neck, within 12 hours I was back in the hospital for a day due to the uncontrollable pain. It was then that they diagnosed me with Complex/Chronic Regional Pain Syndrome, an auto-immune based Nerve disorder that cause constant nerve pain that feels like your body is on fire, your body temperature changes, you have swelling and discoloration of the limb(s). The CRPS also effects your mental state and has your body in a constant state of fight or flight mode. It is important to reduce stress with this disorder. At this point, I was put on Diluadid. It got to a point where I was taking almost 40 mg at a time with no effect. They then gave me Valium, that proved not be a good choice either, I was suicidal within 12 hours of taking it. I slept but woke up ready to die and still in pain. The program trial was for Lyrica and knowing my reaction to all the other medications, it was my medical decision and choice to elect not to go on to the Lyrica. I was dismissed from the trial and from care. The conversation upon exiting with the Neurologist was that they could not go any further with my case that due to the fact that the surgery was not done correctly, a muscle was left attached that should not have been, and it was a huge source of the pain that there was nothing they could do and they did not want involve.
I was devastated. I was once again being denied treatment and all I wanted was to feel better. I began looking for other doctors who were familiar with CRPS or RSD (Reflex Sympathetic Dystrophy) the full body form of CRPS. Lucky enough for me, I found another Neurologist right in La Jolla working out of Scripps claiming to cure patients with CRPS, which I again was a trial and error mistake. Before even walking into her office she had ordered a handful of medications for me to begin trying. She had my records but had not met me. As I walked into her office I was put on Alamax CR, DMSO cream, PeaPure, Low Dose Naltrexone (that was not so low dose), Dextromethorphan, Melatonin, Oxytocin, Vitamin D, and Ketamine Nasal Spray. Within 2 weeks we added Namenda (used for Alzheimers). As June rolled around, I had to head back to Arizona, I had been left alone by now ex in California to fight through all of this on my own and I did not financially have the ability to stay, but luckily this doctor treated patients out of state and my dad was willing to make sure I had flights to get back and forth for monthly appointments. Right before moving back, I had come home for a weekend and had a massive allergic reaction and was at urgent care and the Emergency over a 48 hour period due to the medications. I tried to get a hold of the physician and she would not see me or respond to me. After returning home I continued to try and get an appointment and was hoping for success but she rudely and unexpectedly discharged me from care stating I was mentally unstable and that I was unresponsive to her treatment and not following her protocol. Which was untrue. I continued to take the medications hoping to find someone at home to help me manage but once again no one would work with me. By August, I was out of medications and had no choice but to stop cold turkey.
I had been posting on Facebook and had found pages about CRPS/RSD and had been linked up with one of the 5 people that helped save my life. I was connected with Barby Ingle and the Power of Pain Foundation through one of the patient advocates. This is where my journey from hell takes another turn.
By July of 2011, when I arrived in Boston for my brother's wedding, I weighed less than 95 pounds and was struggling. Everyone knew I was not well but it was not a time to deal with it, it was my brothers wedding. Shortly after the wedding my dad contacted me and asked me what was really going on. He and I had never been close and it was an estranged relationship but he knew his little girl was not doing well after the surgery. I had also lost my health insurance because I graduated and did not have a job with insurance. My dad and I spent the next 8 months fighting to get me help. No one in Arizona would lay a hand on me medically. They either were not familiar with the Thoracic Outlet or did not want to treat me because of the risk of malpractice because of the surgery and not having surgical after care. After contacting doctors and programs across the country it came down to two options. By April of 2012 I was barely walking and was hunched in fetal position most of the time. It was my choice, either John Hopkins in Baltimore, Maryland or UCSD in La Jolla, California. Although my dad had the ability to get on a plane at anytime and get to me if needed, I did not feel comfortable being so far from home if something happen, so I chose to go to UCSD. Still today I question if it was the right decision, but those I questions we cannot answer or even think about, it will only set me back.
After speaking with the doctors, getting my records ready, I was accepting to the UCSD research program on June 20, 2012 and arrived on June 22, 2012 for a chance to get my life back. I was part of their Thoracic Outlet research program and was hoping they would help me. It began with a ton of tests and ct scans, MRI's and x-rays and then began a pain management protocol. I had already tried both Gabapentin and Neurontin prior to surgery with no success, they only made me feel out of control and unable to function with no relief of the pain. I was put on anti-convulsants, I tried medications for osteoporosis which were also being used off label for nerve pain. Neither worked. They tried doing a nerve block where they went in through the front of my neck, within 12 hours I was back in the hospital for a day due to the uncontrollable pain. It was then that they diagnosed me with Complex/Chronic Regional Pain Syndrome, an auto-immune based Nerve disorder that cause constant nerve pain that feels like your body is on fire, your body temperature changes, you have swelling and discoloration of the limb(s). The CRPS also effects your mental state and has your body in a constant state of fight or flight mode. It is important to reduce stress with this disorder. At this point, I was put on Diluadid. It got to a point where I was taking almost 40 mg at a time with no effect. They then gave me Valium, that proved not be a good choice either, I was suicidal within 12 hours of taking it. I slept but woke up ready to die and still in pain. The program trial was for Lyrica and knowing my reaction to all the other medications, it was my medical decision and choice to elect not to go on to the Lyrica. I was dismissed from the trial and from care. The conversation upon exiting with the Neurologist was that they could not go any further with my case that due to the fact that the surgery was not done correctly, a muscle was left attached that should not have been, and it was a huge source of the pain that there was nothing they could do and they did not want involve.
I was devastated. I was once again being denied treatment and all I wanted was to feel better. I began looking for other doctors who were familiar with CRPS or RSD (Reflex Sympathetic Dystrophy) the full body form of CRPS. Lucky enough for me, I found another Neurologist right in La Jolla working out of Scripps claiming to cure patients with CRPS, which I again was a trial and error mistake. Before even walking into her office she had ordered a handful of medications for me to begin trying. She had my records but had not met me. As I walked into her office I was put on Alamax CR, DMSO cream, PeaPure, Low Dose Naltrexone (that was not so low dose), Dextromethorphan, Melatonin, Oxytocin, Vitamin D, and Ketamine Nasal Spray. Within 2 weeks we added Namenda (used for Alzheimers). As June rolled around, I had to head back to Arizona, I had been left alone by now ex in California to fight through all of this on my own and I did not financially have the ability to stay, but luckily this doctor treated patients out of state and my dad was willing to make sure I had flights to get back and forth for monthly appointments. Right before moving back, I had come home for a weekend and had a massive allergic reaction and was at urgent care and the Emergency over a 48 hour period due to the medications. I tried to get a hold of the physician and she would not see me or respond to me. After returning home I continued to try and get an appointment and was hoping for success but she rudely and unexpectedly discharged me from care stating I was mentally unstable and that I was unresponsive to her treatment and not following her protocol. Which was untrue. I continued to take the medications hoping to find someone at home to help me manage but once again no one would work with me. By August, I was out of medications and had no choice but to stop cold turkey.
I had been posting on Facebook and had found pages about CRPS/RSD and had been linked up with one of the 5 people that helped save my life. I was connected with Barby Ingle and the Power of Pain Foundation through one of the patient advocates. This is where my journey from hell takes another turn.
The Beginning
To start my journey we must begin with where I came from. I am 31 years old and my journey began 16 years ago. At the age of 14 I was diagnosed with depression. I was told I was depressed and had anxiety and even told that they wanted to diagnose me as bipolar. The only thing I remember was I was terrified and that I did not think anything was wrong, I thought I was a 14 year old girl struggling to fit in and find my way, as well as dealing with normal female hormones. This was not the case, as I soon found myself sitting in psychiatrist and psychologist offices with my mom and being told I need to take all these different medications. At the time, being only 14 I thought my mom understood more than what she did and we trusted in what the doctors were telling us. I had, had tons of blood work done and they doctors were saying these medications were going to help me feel better. This is where the next 12 years of hell began.
I remember that it began with Prozac, the doctor said this would help my moods and that I would be happy. I was an athlete and all I was focused on was being able to compete and not being so anxious and upset so I started taking the medications. I remember things going well for about 6 weeks and then I started feeling bad again, anxiety was high and I had no control over my emotions. From crying, screaming outbursts where I would say anything and everything to then feeling numb. The doctors increased the dosage and after a week or two I stabilized. This pattern continued for months, after 6-8 months of a roller coaster cycle I had gotten to the highest dosage of the medication and I was quickly put on another medication.
Over the next 12 years I played this roller coaster of a game with anti-depressant, anti-anxiety medications, I would go 6-12 weeks feeling okay and then I would drop off and become severely depressed again, there were even moments of mania. I hated how I felt. Unfortunately, I do not remember everything, only brief moments and major events. There is a lot of my high school and early collegiate years that are foggy and that I do not remember at all. My mom has more than once brought up things that I have done and said that I have absolutely no recollection of even occurring. What I do remember is the torment I felt.
What made things even worse, was being in high school and not fitting in and people finding out I was on these medications and that made it all worse. I was teased and bullied and made fun of. I had people tell I do not need medications, I just need God. I went on and off the medications cold turkey more than once over those 12 years. Especially in high school. I also began drinking heavily to try and cover up what was going on and to try and fit in with what everyone else was doing, but the reality was, it was only making me worse.
Some of the things I do remember scare me today but looking back I realize I was sick and needed help but that I had to find what was going to help me most. My brother was home from college it was either the summer after my freshman or sophomore year of high school, I was so out of control, I remember screaming and crying and carrying on until I found myself on the floor with a meat machete in my hand making threats towards myself. Another instance, New Years of sophomore year of high school, New Year's 2000, I had just turned 16, I got to go to my first New Year's party with a very good friend of mine. I drank myself straight to a hospital stay, but in the back of my mind I was hoping not to wake up. I did not tell anyone how I was feeling before, I just went to the party, had 20 jello shots, ironically, I hate JELLO! I had 2 shots of Goldschlager, 1/2 of pineapple soaked in Parrot Bay for 2 days and several red solo cups of champagne at midnight. My poor friend, he saved my life, he stayed right by my side, he got me home despite me puking out the car window and staying the side of it with jello throw-up. As he struggled to get my limp body to the door, my brother heard him struggling, he sent him home and told him to get his younger brother home and he would take care of me. He only lived around the corner and as he pulled into his driveway, he heard the sirens and knew it was me. He came back and stayed by me at the hospital until I woke. Alcohol poisoning, is awful. The one thing I never told anyone was that I was trying not to wake up. This was a pattern I repeated more than once, not putting myself in the hospital but over drinking to numb the pain. I continued this pattern through college.
I was so over-stressed and anxious that it kept me from a collegiate career with my swimming and that only made things worse. I did not know who I was anymore, not to mention with the medications I was numb and did not remember a lot. I hated life. Because of my lack of confidence in myself and who I was I met all the wrong men and had bad relationships which on made things worse. I was fighting a vicious battle. I was lost and wanted to die.
In May of 2009 I met a guy that supported me in wanting to go off my medications, after he found out that I was on them, after an incident with alcohol that July, he believed I did not need them, even though he did not know much about me or my situation. I began yo-yoing with them and finally went off of them for a while.
December 01, 2009 my life changed forever in a way that I never thought it would. I had a major car accident, a man cut me off on my way home from work, he made a left-hand turn across 3 lanes of on-coming traffic between 2 green lights. I had no where to go and no way to avoid the accident. I t-boned his car on the passenger side between the front passenger and rear passenger doors, right in the middle splitting the frame of his car and totaling my car. All I remember was somehow getting out of my car looking at the front and seeing the transmission and part of the engine on the ground and collapsing. I never fully lost consciousness but was in severe shock, I remember as I came more aware in the hospital being in excruciating pain, I had no feeling in my left pinky and ring finger and had a fire burning sensation all the way up my arm to my neck. I had airbag burns on my right arm that also felt like I was burning from the inside out. They found no internal damage or broken bones and sent me home 12-16 hours after the accident and to follow up with any continued issues with my doctors. I never thought what would happen next was possible but the accident forever changed my life.
I was so distraught and struggling with continued issues after the accident I had gone back on my medications for the depression, by May of 2010, I was feeling out of control and crazy. On May 07, 2010 I left work and went to my doctors office wanting to talk with them and titrate off the medications, stay off of them for 6 months and start over. Apparently, I was so distraught and out of control the psychologist and psychiatrist called the hospital and had an ambulance come take to be evaluated. As I sat in the hospital in front of the fish bowl of nurses, they kept telling me I was going to be there for 24-36 hours on a hold until the hospital Psychiatrist could do an evaluation. I was still taking the Depakote, I was just feeling like it was not working. At that point, I was snuck out of the hospital after taking up a bed for someone who was truly sick for 12 hours. By the time I got home, a police officer was at my home doing a wellness check on me and cleared me. By the next morning, as I arrived at my now ex-boyfriend's parents home, I was being arrested and hauled down to the county Urgent Psychiatric Facility. They told me if I wanted to go home after the 72 hours I had to take the medications. On top of the Depakote that I had already taken that morning I was given 3 other medications. After a 48 hour hold, I was released. I could not talk or hardly walk, it was like I was drunk for several days after. I never went back on medications after that experience. The medications were not helping and I felt they were only making me worse. I worked really hard to keep myself controlled, despite all the pain that I was still coping with from my accident.
December 10, 2010, it had been confirmed that there was severe damage from the accident, I had been diagnosed with Thoracic Outlet Syndrome, the brachial plexus of nerves in my arm had been impinged and that the only relief was to surgically remove my first rib on my left side. December 10th the surgery was performed. I had been in pain for over a year and had lost function in my left arm and hurt all the way down to my hip, it was my only hope, all I wanted was to get back to living. I had been through therapy and numerous injections that showed no extended relief. I was keeping hope to get back to normal and this the surgery would get me back there.
I remember waking up screaming after the surgery was complete. I had a chest tube, as expected, they had slightly collapsed my lung, a risk I knew going into surgery and they had the blood pressure cuff on the same arm. That was taken care of quickly. 16 hours after surgery I was being released, my insurance refused to cover a hospital stay, although I had a chest tube and a collapsed lung. I was sent home. Within 6 hours of arriving home I was being rushed to the local heart hospital unresponsive, vomiting and in unbearable pain. They controlled the nausea and vomiting and rehydrated me and sent me home once again. The next 2 weeks were hell. This is where the next journey begins.
I remember that it began with Prozac, the doctor said this would help my moods and that I would be happy. I was an athlete and all I was focused on was being able to compete and not being so anxious and upset so I started taking the medications. I remember things going well for about 6 weeks and then I started feeling bad again, anxiety was high and I had no control over my emotions. From crying, screaming outbursts where I would say anything and everything to then feeling numb. The doctors increased the dosage and after a week or two I stabilized. This pattern continued for months, after 6-8 months of a roller coaster cycle I had gotten to the highest dosage of the medication and I was quickly put on another medication.
Over the next 12 years I played this roller coaster of a game with anti-depressant, anti-anxiety medications, I would go 6-12 weeks feeling okay and then I would drop off and become severely depressed again, there were even moments of mania. I hated how I felt. Unfortunately, I do not remember everything, only brief moments and major events. There is a lot of my high school and early collegiate years that are foggy and that I do not remember at all. My mom has more than once brought up things that I have done and said that I have absolutely no recollection of even occurring. What I do remember is the torment I felt.
What made things even worse, was being in high school and not fitting in and people finding out I was on these medications and that made it all worse. I was teased and bullied and made fun of. I had people tell I do not need medications, I just need God. I went on and off the medications cold turkey more than once over those 12 years. Especially in high school. I also began drinking heavily to try and cover up what was going on and to try and fit in with what everyone else was doing, but the reality was, it was only making me worse.
Some of the things I do remember scare me today but looking back I realize I was sick and needed help but that I had to find what was going to help me most. My brother was home from college it was either the summer after my freshman or sophomore year of high school, I was so out of control, I remember screaming and crying and carrying on until I found myself on the floor with a meat machete in my hand making threats towards myself. Another instance, New Years of sophomore year of high school, New Year's 2000, I had just turned 16, I got to go to my first New Year's party with a very good friend of mine. I drank myself straight to a hospital stay, but in the back of my mind I was hoping not to wake up. I did not tell anyone how I was feeling before, I just went to the party, had 20 jello shots, ironically, I hate JELLO! I had 2 shots of Goldschlager, 1/2 of pineapple soaked in Parrot Bay for 2 days and several red solo cups of champagne at midnight. My poor friend, he saved my life, he stayed right by my side, he got me home despite me puking out the car window and staying the side of it with jello throw-up. As he struggled to get my limp body to the door, my brother heard him struggling, he sent him home and told him to get his younger brother home and he would take care of me. He only lived around the corner and as he pulled into his driveway, he heard the sirens and knew it was me. He came back and stayed by me at the hospital until I woke. Alcohol poisoning, is awful. The one thing I never told anyone was that I was trying not to wake up. This was a pattern I repeated more than once, not putting myself in the hospital but over drinking to numb the pain. I continued this pattern through college.
I was so over-stressed and anxious that it kept me from a collegiate career with my swimming and that only made things worse. I did not know who I was anymore, not to mention with the medications I was numb and did not remember a lot. I hated life. Because of my lack of confidence in myself and who I was I met all the wrong men and had bad relationships which on made things worse. I was fighting a vicious battle. I was lost and wanted to die.
In May of 2009 I met a guy that supported me in wanting to go off my medications, after he found out that I was on them, after an incident with alcohol that July, he believed I did not need them, even though he did not know much about me or my situation. I began yo-yoing with them and finally went off of them for a while.
December 01, 2009 my life changed forever in a way that I never thought it would. I had a major car accident, a man cut me off on my way home from work, he made a left-hand turn across 3 lanes of on-coming traffic between 2 green lights. I had no where to go and no way to avoid the accident. I t-boned his car on the passenger side between the front passenger and rear passenger doors, right in the middle splitting the frame of his car and totaling my car. All I remember was somehow getting out of my car looking at the front and seeing the transmission and part of the engine on the ground and collapsing. I never fully lost consciousness but was in severe shock, I remember as I came more aware in the hospital being in excruciating pain, I had no feeling in my left pinky and ring finger and had a fire burning sensation all the way up my arm to my neck. I had airbag burns on my right arm that also felt like I was burning from the inside out. They found no internal damage or broken bones and sent me home 12-16 hours after the accident and to follow up with any continued issues with my doctors. I never thought what would happen next was possible but the accident forever changed my life.
I was so distraught and struggling with continued issues after the accident I had gone back on my medications for the depression, by May of 2010, I was feeling out of control and crazy. On May 07, 2010 I left work and went to my doctors office wanting to talk with them and titrate off the medications, stay off of them for 6 months and start over. Apparently, I was so distraught and out of control the psychologist and psychiatrist called the hospital and had an ambulance come take to be evaluated. As I sat in the hospital in front of the fish bowl of nurses, they kept telling me I was going to be there for 24-36 hours on a hold until the hospital Psychiatrist could do an evaluation. I was still taking the Depakote, I was just feeling like it was not working. At that point, I was snuck out of the hospital after taking up a bed for someone who was truly sick for 12 hours. By the time I got home, a police officer was at my home doing a wellness check on me and cleared me. By the next morning, as I arrived at my now ex-boyfriend's parents home, I was being arrested and hauled down to the county Urgent Psychiatric Facility. They told me if I wanted to go home after the 72 hours I had to take the medications. On top of the Depakote that I had already taken that morning I was given 3 other medications. After a 48 hour hold, I was released. I could not talk or hardly walk, it was like I was drunk for several days after. I never went back on medications after that experience. The medications were not helping and I felt they were only making me worse. I worked really hard to keep myself controlled, despite all the pain that I was still coping with from my accident.
December 10, 2010, it had been confirmed that there was severe damage from the accident, I had been diagnosed with Thoracic Outlet Syndrome, the brachial plexus of nerves in my arm had been impinged and that the only relief was to surgically remove my first rib on my left side. December 10th the surgery was performed. I had been in pain for over a year and had lost function in my left arm and hurt all the way down to my hip, it was my only hope, all I wanted was to get back to living. I had been through therapy and numerous injections that showed no extended relief. I was keeping hope to get back to normal and this the surgery would get me back there.
I remember waking up screaming after the surgery was complete. I had a chest tube, as expected, they had slightly collapsed my lung, a risk I knew going into surgery and they had the blood pressure cuff on the same arm. That was taken care of quickly. 16 hours after surgery I was being released, my insurance refused to cover a hospital stay, although I had a chest tube and a collapsed lung. I was sent home. Within 6 hours of arriving home I was being rushed to the local heart hospital unresponsive, vomiting and in unbearable pain. They controlled the nausea and vomiting and rehydrated me and sent me home once again. The next 2 weeks were hell. This is where the next journey begins.
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