Healing Is Not A Linear Process - 500 Steps Forward, 1,000 Steps Back?
New Treatments
Towards the end of June, I got braces and a RPE (Rapid Palatal Expander) inserted on the roof of my mouth in hopes to fix my cross bite, correct my bite (class II malocculusion), and relieve pressure on my jaw joints. Treating TMJ with braces is very controversial, but I took a risk with the procedure because I've maxed out my options and do not want to get surgery due to the high failure rate. Much of my troubles in July has been attributed to the RPE. The RPE is an appliance that widens my narrow palate and is cemented at the roof of my mouth. It widens by breaking the palatal suture in your skull. I made a rushed decision to get the RPE because around age 23, the sutures in your skull start to fuse, making it impossible to break with an RPE. Breaking a fused palatal suture would require a painful surgery that could go wrong. The RPE expands by inserting a key in the appliance and turning it.
My problem with the RPE is that it is was way too aggressive for a sensitive and unstable jaw like mine that is uneven due to bone and tissue loss on my left side. I was also instructed to turn the key 2 times a day, which is a lot for a normal person with normal bone and tissue structure (I am not normal)! IMO, the RPE is like a modern day self-torture device for TMJ patients. Expanding it twice a day felt like hell. During the first 3 days, I felt a lot of pressure on my palate and nasal area because I was expanding it once. On the 4th day I started expanding it twice and the pain became unbearable. I started having muscle spasms on my right scalp, neck, back, and a muscle near my throat. My equilibrium was thrown off and I felt nauseous. The acrylic on the appliance was rubbing on my gums and causing it to swell. Sometimes there would be sharp pain that would pierce at the area where the neck and skull meets. I became a complete mess physically and mentally, and felt like I was at my worse. Problems I had fought so hard to get rid of a year ago came back 5 times harder. I would cry in pain all night till 8 AM...cry when I woke up...and cry some more in the most random areas. My family would check up on me and tell me to hang in there because "it's suppose to hurt, before it heals"....but I don't think it was suppose to hurt this bad.
As I mentioned in my previous post, when there is constant physical pain, mental health problems will follow. No matter how much pain I was in, people would just always give me the same line "it's suppose to hurt before it heals". I felt like no one was listening to me, that listening to my own body was not legitimate. In order to try to move forward, I just listened to everyone and continued turning the key 2 times a day. The process was very frustrating and the constant pain triggered a lot of anxiety in me. I started to become very depressed the more I thought about the chance of permanently living in this type of pain. How about if something went wrong? What if the expansion damaged the sensitive areas around my TMJ? There were a lot of what ifs. Googling the "RPE & TMJ" did not help because some people wrote how it permanently damaged their nerves. There were legitimate fears of me not being able to ever work again and relying on disability. My self worth felt low...what could a person with my chronic pain disability offer to this fast paced society? Although I'm so fortunate with amazing support, there was still a part of me that felt extremely lonely. People often mistaken me for being well because of the way I look. I look normal. I try to stay optimistic. I have a habit of smiling a lot. I like to laugh at the most random things....but I still have this chronic pain disorder and still continue to struggle with limits in my life that may not be visible to my friends or family no matter how much I try to explain it. I felt lonely because there were moments where support from friends and family was not enough to relieve my pain. The pain was so overwhelming that it took a hold of me somehow. I started getting hit with overwhelming waves of emotions where kinda out of nowhere I would break down and feel down about my situation and guilty for feeling this way. It kinda felt like someone just ripped your heart out and just started stomping on it...I am not exaggerating. The pain took over at the most random places. I was at a tile store with Leon and had to go in and out of the store because tears were flowing down my eyes. I had to finally ask him for the car keys because I was having a melt down. I started to have another melt down at a pho restaurant and more melt downs in my car. There were often times where I told myself that I call it quits and that I didn't want to fight anymore.
This severe pain lasted for 2 weeks. It started getting a lot better when I DECIDED to expand it once instead of twice a day...there were even days where I did NOT expand it for the sake of my sanity. Sometimes, you just got to trust and listen to yourself, despite not having a D.D.S. or M.D.. Fortunately, the expansion is over, and I just have to keep the RPE in my mouth for another 2 months so my palate does not fuse back. Although the expansion was somewhat successful (it got rid of my cross bite), I would not recommend it to someone who has an unstable TMJ. Because the appliance is "rapid", the expansion doesn't consider the sensitivity of other areas around the head and could cause more damage. Don't get me wrong, the RPE has a very high success rate with a normal jaw and is done on many children because their sutures are easier to break.
And the Pain Comes Back...
After the dealing with the RPE pain, I went through a few weeks feeling better by getting physical therapy treatment on my neck and shoulders, but as of last Thursday, things started to get worse again. There was too much pressures applied to my left jaw during a treatment, and it has caused immense pain. It feels like my condyle or TMJ disc was pushed in too much. My head doesn't feel like it's sitting on my neck straight. There is tension on my left face, I cannot roll my head to the left or else I'll hear this grating/ cracking sound, there, there is pressure on my ear canal...my bones hurt...I feel like I have 2 faces...my equilibrium is off. Things are not good, and I am back to taking pain medication. If you know me, you'll know that I have horrible experiences with pain medication and will not take it...even if I am crying my eyes out. Well, this new pain has gotten to a point where I cannot function without it. I am taking Naproxen 500MG to stop the inflammation and Cyclobenzaprine 10MG to help with the muscle spasms. Naproxen doesn't help that much & Cyclobenzaprine knocks me out for a whole day. I took Cyclobenzaprine last night and I still feel the effects from it...high as a kite.
Healing is not a linear process...
My experience with chronic pain always makes me question if I had taken 500 steps forward or 1,000 steps back. In May, my first blog post was titled "Healing" and I wrote about how I was moving forward, making steps to recovery, and being hopeful, then a month later unfortunate things happen and I felt like I was pushed back further than I ever was. I felt discouraged and thought what was all these years of effort for? Was I really healing in the way that I claimed in my first blog post? Was it an illusion for optimism's sake? I felt like I did not have the "right" to write or give advice about healing when I was doubting my own healing process. As challenging as the days are, I try very hard to remind myself that healing is not a linear process. There will be days where you feel on top of the world... think your problems are finally gone and feel like you are finally ready to move on & there are many days where you are at your lowest...feeling like that you cannot no longer fight and want to call it quits. Healing is a process filled with moments of disappointment, anger, sadness & frustration...feelings of frustration because no matter how much effort or hard you fight, you are pushed back further than you ever started. There are moments of loneliness, things you cannot share, experiences that no one will ever understand and moments of uncertainty and fear that you may never heal in the future.
Life can be extremely unfair, it will take people away, throw things at your face that you don't deserve, and place you in path you never imagined yourself in. Despite the difficulty of physically blogging, I really wanted to write this post to share what I've learned the past 3 months and remind those going through any difficulty (it doesn't even have to be associated with chronic pain) to take a step back and celebrate your life and how far you have come within your struggle. Celebrate your tenacity...your willingness to still fight. Embrace your resilience and other people's resilience. Embrace it and know that the mere act of choosing to get up when beaten down is one of the largest steps forward to healing even though it is not as visible and does not quickly give us the results we were hoping to see. A couple weeks ago, my father opened up to me about his journey about dealing with his own chronic pain for 25 years and said, "you might hate where you are at... you might feel behind from your peers due to your pain but know that there are bigger things behind this struggle that will make you a better person. There are important things you will learn, feel, and empathize with that no textbook can teach you. There are blessings and different opportunities waiting behind all of this pain. Don't say you can't do things anymore. Just say you can't do it right now but will sometime in the future. You've got to fight as hard as you can." <3
I would be lying if I said that still don't go through many days of frustration and sadness for not being able to change my situation. I just got to remind myself that healing is not a linear process and that these moments of pain are teaching me something. The worse thing about chronic pain is that it is not only debilitating physically but mentally. There are a lot points where you feel that you can't change ANYTHING...but you really can! You can change your perception to empower yourself. I am slowly trying to...
What I CAN change the next few days:
Towards the end of June, I got braces and a RPE (Rapid Palatal Expander) inserted on the roof of my mouth in hopes to fix my cross bite, correct my bite (class II malocculusion), and relieve pressure on my jaw joints. Treating TMJ with braces is very controversial, but I took a risk with the procedure because I've maxed out my options and do not want to get surgery due to the high failure rate. Much of my troubles in July has been attributed to the RPE. The RPE is an appliance that widens my narrow palate and is cemented at the roof of my mouth. It widens by breaking the palatal suture in your skull. I made a rushed decision to get the RPE because around age 23, the sutures in your skull start to fuse, making it impossible to break with an RPE. Breaking a fused palatal suture would require a painful surgery that could go wrong. The RPE expands by inserting a key in the appliance and turning it.
 | ||
| This is the upper jaw viewed from underneath. You can see the suture that separates both halves of the upper jaw(the squiggly line down the center). This is the suture that opens (and subsequently fills in with new bone) when an RE is used. |
 |
| This is my Class II Malocculusion bite (I think?) As you can see, I have a cross bite on my molar. My top molar is moving in when it's suppose to be over my bottom molar. Does that make sense? This cross bite puts a lot of pressure on my TMJ. |
 |
| my ortho wants to pull my left jaw forward to reduce pressure on my TMJ |
My problem with the RPE is that it is was way too aggressive for a sensitive and unstable jaw like mine that is uneven due to bone and tissue loss on my left side. I was also instructed to turn the key 2 times a day, which is a lot for a normal person with normal bone and tissue structure (I am not normal)! IMO, the RPE is like a modern day self-torture device for TMJ patients. Expanding it twice a day felt like hell. During the first 3 days, I felt a lot of pressure on my palate and nasal area because I was expanding it once. On the 4th day I started expanding it twice and the pain became unbearable. I started having muscle spasms on my right scalp, neck, back, and a muscle near my throat. My equilibrium was thrown off and I felt nauseous. The acrylic on the appliance was rubbing on my gums and causing it to swell. Sometimes there would be sharp pain that would pierce at the area where the neck and skull meets. I became a complete mess physically and mentally, and felt like I was at my worse. Problems I had fought so hard to get rid of a year ago came back 5 times harder. I would cry in pain all night till 8 AM...cry when I woke up...and cry some more in the most random areas. My family would check up on me and tell me to hang in there because "it's suppose to hurt, before it heals"....but I don't think it was suppose to hurt this bad.
 |
| The evil RPE |
As I mentioned in my previous post, when there is constant physical pain, mental health problems will follow. No matter how much pain I was in, people would just always give me the same line "it's suppose to hurt before it heals". I felt like no one was listening to me, that listening to my own body was not legitimate. In order to try to move forward, I just listened to everyone and continued turning the key 2 times a day. The process was very frustrating and the constant pain triggered a lot of anxiety in me. I started to become very depressed the more I thought about the chance of permanently living in this type of pain. How about if something went wrong? What if the expansion damaged the sensitive areas around my TMJ? There were a lot of what ifs. Googling the "RPE & TMJ" did not help because some people wrote how it permanently damaged their nerves. There were legitimate fears of me not being able to ever work again and relying on disability. My self worth felt low...what could a person with my chronic pain disability offer to this fast paced society? Although I'm so fortunate with amazing support, there was still a part of me that felt extremely lonely. People often mistaken me for being well because of the way I look. I look normal. I try to stay optimistic. I have a habit of smiling a lot. I like to laugh at the most random things....but I still have this chronic pain disorder and still continue to struggle with limits in my life that may not be visible to my friends or family no matter how much I try to explain it. I felt lonely because there were moments where support from friends and family was not enough to relieve my pain. The pain was so overwhelming that it took a hold of me somehow. I started getting hit with overwhelming waves of emotions where kinda out of nowhere I would break down and feel down about my situation and guilty for feeling this way. It kinda felt like someone just ripped your heart out and just started stomping on it...I am not exaggerating. The pain took over at the most random places. I was at a tile store with Leon and had to go in and out of the store because tears were flowing down my eyes. I had to finally ask him for the car keys because I was having a melt down. I started to have another melt down at a pho restaurant and more melt downs in my car. There were often times where I told myself that I call it quits and that I didn't want to fight anymore.
This severe pain lasted for 2 weeks. It started getting a lot better when I DECIDED to expand it once instead of twice a day...there were even days where I did NOT expand it for the sake of my sanity. Sometimes, you just got to trust and listen to yourself, despite not having a D.D.S. or M.D.. Fortunately, the expansion is over, and I just have to keep the RPE in my mouth for another 2 months so my palate does not fuse back. Although the expansion was somewhat successful (it got rid of my cross bite), I would not recommend it to someone who has an unstable TMJ. Because the appliance is "rapid", the expansion doesn't consider the sensitivity of other areas around the head and could cause more damage. Don't get me wrong, the RPE has a very high success rate with a normal jaw and is done on many children because their sutures are easier to break.
And the Pain Comes Back...
 |
| These are the CT scans of my Left & Right TMJ & Condyle in close position taken in Sept. 2010. As you can see, my left side is more worn down than my right and is the cause of all this pain. Because of the bone loss, my TMJ disc is loose and unstable, so it can cause different types of pain depending on the position that is it pushed in. |
After the dealing with the RPE pain, I went through a few weeks feeling better by getting physical therapy treatment on my neck and shoulders, but as of last Thursday, things started to get worse again. There was too much pressures applied to my left jaw during a treatment, and it has caused immense pain. It feels like my condyle or TMJ disc was pushed in too much. My head doesn't feel like it's sitting on my neck straight. There is tension on my left face, I cannot roll my head to the left or else I'll hear this grating/ cracking sound, there, there is pressure on my ear canal...my bones hurt...I feel like I have 2 faces...my equilibrium is off. Things are not good, and I am back to taking pain medication. If you know me, you'll know that I have horrible experiences with pain medication and will not take it...even if I am crying my eyes out. Well, this new pain has gotten to a point where I cannot function without it. I am taking Naproxen 500MG to stop the inflammation and Cyclobenzaprine 10MG to help with the muscle spasms. Naproxen doesn't help that much & Cyclobenzaprine knocks me out for a whole day. I took Cyclobenzaprine last night and I still feel the effects from it...high as a kite.
Healing is not a linear process...
My experience with chronic pain always makes me question if I had taken 500 steps forward or 1,000 steps back. In May, my first blog post was titled "Healing" and I wrote about how I was moving forward, making steps to recovery, and being hopeful, then a month later unfortunate things happen and I felt like I was pushed back further than I ever was. I felt discouraged and thought what was all these years of effort for? Was I really healing in the way that I claimed in my first blog post? Was it an illusion for optimism's sake? I felt like I did not have the "right" to write or give advice about healing when I was doubting my own healing process. As challenging as the days are, I try very hard to remind myself that healing is not a linear process. There will be days where you feel on top of the world... think your problems are finally gone and feel like you are finally ready to move on & there are many days where you are at your lowest...feeling like that you cannot no longer fight and want to call it quits. Healing is a process filled with moments of disappointment, anger, sadness & frustration...feelings of frustration because no matter how much effort or hard you fight, you are pushed back further than you ever started. There are moments of loneliness, things you cannot share, experiences that no one will ever understand and moments of uncertainty and fear that you may never heal in the future.
Life can be extremely unfair, it will take people away, throw things at your face that you don't deserve, and place you in path you never imagined yourself in. Despite the difficulty of physically blogging, I really wanted to write this post to share what I've learned the past 3 months and remind those going through any difficulty (it doesn't even have to be associated with chronic pain) to take a step back and celebrate your life and how far you have come within your struggle. Celebrate your tenacity...your willingness to still fight. Embrace your resilience and other people's resilience. Embrace it and know that the mere act of choosing to get up when beaten down is one of the largest steps forward to healing even though it is not as visible and does not quickly give us the results we were hoping to see. A couple weeks ago, my father opened up to me about his journey about dealing with his own chronic pain for 25 years and said, "you might hate where you are at... you might feel behind from your peers due to your pain but know that there are bigger things behind this struggle that will make you a better person. There are important things you will learn, feel, and empathize with that no textbook can teach you. There are blessings and different opportunities waiting behind all of this pain. Don't say you can't do things anymore. Just say you can't do it right now but will sometime in the future. You've got to fight as hard as you can." <3
I would be lying if I said that still don't go through many days of frustration and sadness for not being able to change my situation. I just got to remind myself that healing is not a linear process and that these moments of pain are teaching me something. The worse thing about chronic pain is that it is not only debilitating physically but mentally. There are a lot points where you feel that you can't change ANYTHING...but you really can! You can change your perception to empower yourself. I am slowly trying to...
What I CAN change the next few days:
- get at least 9 hours of sleep
- drink water
- drink a green smoothie
- practice yoga at least 4 times a week
- work out my core to improve my posture
- talk to my parents more (I've been in hiding in my room a lot)
- schedule an appointment with my pain management therapist @ USC (I haven't seen her in a month!)
- go to my osteopath to hopefully push my jaw back in place
- go back to taping my mouth when I sleep (nose breathing is healthier & reduces my headaches when I wake up)
- not be so hard on myself & stop comparing myself to other people
<3 u!
ReplyDeleteAw tiff I <3 you. You inspire me to appreciate the everyday and especially my health. You are one of the strongest people I know <333 miss you
ReplyDeleteAre those holes in the bone normal? I have that & it freaks me out.
ReplyDelete