Somewhere around 2005-2006 I went through an excruciating electrodiagnostic test that showed I have Carpal Tunnel Syndrome (CTS) in both wrists. The doctor and I think it was caused by the way I sleep and not because of typing, texting, or even the repetitive motions of being a cashier (perhaps a combination but definitely because of my sleeping since it's the worst at night). I tend to sleep with my wrists bent so my hands are sort of tucked into me. The doctor told me to get wrist splints to wear at night. I did. It helped significantly.
After being diagnosed I would go through phases with my wrists - I'd have to wear my braces for months at a time and then I could go months without wearing them. Sometimes the pain would be bad enough I wore my splints to work. Other times I would have absolutely no pain and forget I had CTS in the first place.
For the past few months I've had to wear my braces every night and my wrists have been getting worse. It's been so bad that I wake up in the middle of the night with my hands burning, aching, and tingling... I would walk around rubbing my hands and arms, all the while crying because I didn't know what else to do. I tried pain meds but nothing helped. I wasn't sleeping more than 2 hours at a time and that certainly didn't help matters. It's probably the worst pain I have ever felt. Now I'm not waking up with that severe pain (I think largely in part because my mom suggested I use either Aspercreme or Arnicare and I took her advice). However, I still have constant pain, numbness and/or tingling in both hands. I still wear my braces at night and sometimes during the day.
Sometimes my CTS makes it difficult to do many everyday things such as shower, put on jewelry, and even unbutton my jeans. It also makes typing and texting a challenge. So yes, I am struggling some just to type this blog entry. Breaks are good.
I finally had to do something about my pain, so I saw my orthopedic doctor yesterday. He recommended surgery for my left hand. I was too scared to commit to surgery during my appointment, so I got an injection of cortisone. I'm still in pain from the shot - tingling, numbness, light burning sensation, and some pain up into my forearm. Since I'm left-handed, this had made normal tasks even more difficult than before the injection. I guess this is a trial run for the recovery from my surgery. Yes, that means I decided I will have the surgery. If I don't I can lose the use of my hand and that would be detrimental. If I do the worst that can happen is it doesn't work.
I will be calling on Monday to start the process to have surgery. My goal is to have it right before spring break so I will have the week to recover without having to take time off from work. The doctor says I should be recovered enough for regular "light" tasks within about a week but it could take a few months to have complete functionality back. My dad had this very same surgery and said he was already feeling better the very next day. He said once he got his stitches out it was feeling much better. This helps me feel better about the decision to have surgery.
I'm really scared to have surgery but I'm more scared to not have surgery.
So why am I writing about this on my blog about TMJ? It's my belief that they are related and my doctors support this claim to an extent. I know when my hands hurt, I tend to clench my jaw more often. When my jaw is hurting, I am more tense - in my neck, shoulders, and arms. Surely this affects my CTS. Maybe the surgery will fix my hand and and the stress relief from that will help everything else. I'm certainly hoping this surgery takes one invisible illness off my list.
Thought of the Day: "Hope is the feeling that the feeling you have isn't permanent." - Jean Karr
I believe this is true. Hope is powerful, just like all positive thoughts.
One year ago today I had surgery to remove a lymph node from my neck. They were going to do a biopsy to determine if I had cancer.
It all started when I went to the nurse at the school where I teach on the afternoon of Thursday, September 29th. I was so dizzy I could barely walk. The nurse said I looked pale and she made me sit in her office for a while. Good thing I had coverage for my class (Thank you, Karen!). She told me I was probably getting sick. She recommended I take it easy over the weekend so I said I would. Friday was also a rough day because I kept getting dizzy. I was also having hot flashes (I'll never forget my principal saying to me, "You're too young for personal summers."). I assumed, as the nurse had said, that I was getting sick. You know what they say about people who assume things...
I took it easy all weekend. I felt the same as I had on Thursday and Friday. I didn't get worse but I didn't get better, either. I felt much the same into the week. Also, I had noticed that the lymph nodes in my neck were swollen so I decided it was time to see my doctor. I don't really remember the events of the following month. What I do remember is the two high-contrast CT scans I had of my neck and head. It's not that the scans themselves were bad - they really weren't except for the whole being still thing. What sucked about them was the discovery that I am allergic to IV Iodine. I have never ever itched so bad and I never want to have that feeling again. I wanted to rip my skin off. It was awful. I know it could have been so much worse but it still felt terrible. I itched for weeks.
When the results came in from the scans, it was both good and bad. The scans didn't show anything. My doctor recommended I see a surgeon for a biopsy of my lymph nodes to see if it would give us an answer. She then told me some things to prepare me for what might happen with the biopsy. That's when she said it. Lymphoma. She told me not to worry about it, but that it was one of the possibilities. I had been doing research about my symptoms and had come up with that as a possibility myself. Of course I was terrified. Talking with my mom about it, we decided that if that was the diagnosis, at least we would have an answer. Besides that, it's curable. I saw the surgeon on the morning of Thursday, November 10th, 2011 (and my friend Becky tagged along so I'd have a second set of ears. Thank you Becky!). He recommended surgery to remove one lymph node for testing. Surgery. Yuck. I went out to the desk to schedule my surgery. The woman at the desk was amazing. I could tell she understood my fear and tried her best to calm me. She mentioned a few dates for surgery and then stopped. She flipped to a different page in her book and said, 'How about tomorrow?" What? No. Not tomorrow. No way. Becky told me to do it. She reminded me that I was off from work anyway, so I wouldn't have to take off another day. She even said her husband could drive me if need be. So I did it. I scheduled for the very next day (which was 11-11-11 - good luck, right?). I got paperwork and instructions. Becky and I left. She told me it would be okay.
I called my parents. I told them what the surgeon had said. My mom told me they would drive up to be with me (they live 6 hours away). I told them that wasn't necessary and that I could do it on my own. I got scared and changed my mind. My parents left work early, went home to pack, and drove up. We spent the night in a hotel and then went to the hospital the next morning for my surgery.
So while I was absolutely the most scared I've ever been in my whole life, I had the surgery. I don't remember much from before the surgery except that the anesthesiologist was hot and he kept telling jokes. The next thing I knew, I was waking up in recovery. That was a very freaky experience. I couldn't move. I couldn't focus my eyes. I couldn't talk. Slowly I regained my senses. I remember telling the nurse I couldn't move. She told me that was normal and to relax. I have no idea how long I laid there. All I remember is that it felt like an eternity and I just wanted to see my mom.
The rest of that weekend is fuzzy. I spent a lot of time in bed. I had a lot of pain. When my dad took off the bandages, my neck looked disgusting. It was a little better after I washed it, but I kept it covered up for a while at school so the kids wouldn't see it. Now it's just a thin line on the side of my neck.
I don't remember the day I got the results from the biopsy. I just remember talking to the surgeon. He told me the results didn't show anything. No cancer. I was relieved. Strangely, I was also upset. I was back at square one, not having the slightest idea what was wrong with me. I cried.
I went back to my regular doctor. She told me they had done all the testing they could. She told me it was probably from allergies having settled in my lymph nodes. She told me to take a daily allergy medicine. I still take the daily allergy medicine.
I still have a lot of pain/stiffness in my neck, but the lymph nodes very rarely feel swollen. I heard somewhere that people with TMJD can experience swollen lymph nodes. Even though my swollen lymph nodes occurred about 10 months before the TMJD diagnosis, my belief is that they are related in some way. As my dentist has told me, he feels I've had TMJD since I got my braces off about 15 years ago, but it was never bad enough to require attention/treatment until the bad pop of my jaw I experienced one day over the summer.
The photo is of my scar, one year after surgery. It's hard to see, but that's the point.
Thought of the day: "May you live the days of your life." -Jonathan Swift
After my cancer scare my perception of life changed. I felt lucky to be alive and well. I decided to make time for something I enjoy every single day. A year later I have not truly stuck to that, but I do try to find more joy where I can and enjoy life. Some days that is extremely difficult, but I do what I can. Life is a precious gift and that's why they call it the present.
I've always been somewhat of a mouth breather when I sleep. That is, when I'm not grinding and clinching. Anyway, as you may know, mouth breathing often leads to drooling. Yes, I 'm admitting on the World Wide Web that I drool on occasion. It happens.
When I got the MORA things changed a bit. Even with my lips together my teeth cannot completely close. As you may imagine, this causes me to drool. There's nothing quite like the rude awakening I get when I roll over and feel a spot of wetness on my cheek. Um... Ew. It can be worse than that but I won't go there.
It's quite frustrating in the middle of the night but I don't really know what I can do about it. During the day I have a dry mouth and at night I drool. Hmm. Oh well. One of life's quandaries I suppose.
Thought of the Day: "You drool when you sleep." -Rick Riordan, The Lighning Thief
Um. Well. Yeah.
I had a check-up with Dr. V on Thursday after work. It had been a month since my last check-up because with my weekly appointments I was doing very well.
The closer I got to Thursday's appointment, the more pain I was experiencing. I had a lot of ear pain and popping (like when you change elevations), jaw pain, headaches, and my carpal tunnel was getting worse again (I've discovered the two conditions are related). I thought about calling to get an earlier appointment but I got so busy it just didn't happen.
I get called back for my appointment and Dr. V had me bite on the little films to check my progress. His comment when I pulled out my MORA was that I was way out of alignment. He had to do some pretty big adjustments to it. He said, "no wonder you're in pain." He told me the cause for the alignment issue is probably clenching and grinding during the night. I have no idea how to stop doing that. I have learned a technique from Stacy at TMJ Hope to stop clenching during the day - "Lips together, teeth apart" and tongue against the teeth as though making an N sound. So far this seems to be helping during the day as I try to say it to myself often. Now I just need to figure out how to say it to myself at night. A cd with subliminal messages, perhaps?
After the adjustments, he told me he wanted to see me in a week.
I am still experiencing the ear popping and pain along with some jaw pain. My wrists and hands still hurt but it's a little better than it was. Maybe I do need to be back on weekly appointments. I'm sad about the apparent set-back but I'm not worried about it. It is what it is and with Dr. V's help I can continue moving forward.
Thought of the Day: "Anytime you suffer a setback or disappointment, put your head down and plow ahead." - Les Brown
I sometimes have trouble falling asleep. I can't remember how I discovered Andrew Johnson's meditation/relaxation apps, but I did. Perhaps I was doing a search on iTunes for apps to help me fall asleep.
Mr. Johnson has well over a dozen apps on just about any topic - social phobia, quitting smoking, procrastination, losing weight, and deep sleep to name a few. I find these apps to be very effective and I absolutely love listening to them as I fall asleep each night (I rarely make it past the induction. I have quite a few of them and my current favorite is "Lose Weight". It could be the placebo effect or it could actually be working - either way I feel like it helps me want healthier foods and less junk. That's always a good thing.
The newest one I bought is called Pain Relief. I've only listened once but it is quite calming and he talks about releasing discomfort. If nothing else, I hope it helps me relax my jaw because I am always so very tense.
I highly recommend trying out one or more of the apps. You can do them during the day for meditation or at night to help you fall asleep. I know all of them are available for iPhone and at least some of them are available for Android.
Click to visit:
Mr. Johnson's website
Mr. Johnson's Facebook
Thought of the Day: "Relax. Change. Create." -Andrew Johnson
"You don't look sick."
You're right. I don't. But I am sick. I have this chronic invisible illness called Temporomandibular Joint Disorder (TMJ or TMJD). TMJ occurs when the chewing muscles and joints of the jaw are unable to function properly. There are many things that can causeTMJ: grinding, clenching, bad orthodontic treatments, a bad bite, disk erosion or out of alignment, damaged cartilage, damage caused by impact to the jaw, fatigue in the muscles (for instance, constantly chewing gum). Not everyone who has these conditions will develop TMJ but people with TMJ will have had one or more of these. What caused my TMJ? I don't know if there's any one culprit. I grind. I clench. I used to chew gum a lot. I had braces as a teen and Dr V thinks that's when my TMJ started. I have been hit in the jaw but never thought much of it. Over the summer, my jaw popped. It was audible. It hurt bad enough that I went to the local doc-in-a-box. The dr there gave me pain meds. That gave me temporary relief but I knew something else was wrong. This was when I first went to Dr V and was immediately put into treatment for my TMJ. It was by sheer luck (or maybe divine intervention) that my friend Karen recommended Dr V to me after I had bad experiences at another dental office. Dr V happens to have a specialty in treating patients with TMJ. How extremely fortunate for me!
What are the common signs and symptoms of TMJ?
-pain and/or tenderness
-pain in and around the ear
-difficulty chewing, often with pain
-locking of the jaw
-uncomfortable and/or uneven bite
I think a lot of people don't understand what it feels like to have TMJ. Think about hurting your knee or maybe your ankle. It's difficult to use it. It hurts constantly but especially when you try to walk. It takes time to heal. This is very similar to how TMJ feels. The major difference? TMJ will never heal. It's called chronic because although there are treatments to alleviate pain, there is no cure.
Though you may not see it, it hurts when I eat. It hurts when I talk and by the end of the school day all I want to do is be quiet (and it hurts when I sing to my favorite songs in the car). It hurts to laugh. It really hurts when I yawn. My ears pop all the time when I'm chewing - sometimes it hurts and sometimes it doesn't. Sometimes I can eat certain foods that other times I cannot eat and I never know if it will be a good food day or a bad food day. I have headaches all the time and the pain often radiates into my neck, shoulders and arms (often aggravating my pre-existing condition of carpal tunnel syndrome). It hurts to sleep because I can't sleep on my back and any other position puts pressure on my face (even with my good buckwheat pillow). I have balance issues and I've fallen several times because of it. I have to wear this pink splint in my mouth that makes me have a lisp. People look at me funny (I think they don't know what to say) and just stare at my mouth. This whole thing is stressful and causes quite a bit of depression, even though I try very hard to battle it. I had mental health issues before the TMJ came about, so I'm trying to be very careful with my moods.
So what is The Spoon Theory and how does it apply to me? The Spoon Theory says that people with a chronic illness (no matter what it is) have a limited amount of "spoons" to use during the day. Spoons are needed to complete all tasks during a day. Some activities need 1 spoon, others may need 2 or 3 spoons. I also use a spoon when I forget and do something that causes me pain (such as resting my head in my hand - a habit I am finding extremely difficult to break). People with no chronic illness have an unlimited amount of spoons and they can theoretically do whatever they want. I'm still trying to figure out my exact number of spoons because each day seems so different right now (I think I'm operating on 15 a day). Sometimes I use spoons on things that are not necessarily related to my jaw because I'm somewhat of a magnet for invisible illnesses - TMJ, Carpal Tunnel Syndrome, Osteoarthritis in my knees, migraines, insomnia, and mental health issues. Sometimes I use spoons unexpectedly, such as the other day when I hit a bump on the road and it jarred me enough that my teeth hit. Yeah, that hurt. Cost: 1 spoon. The more spoons I use, the more run-down and tired I become. The more spoons I use, the more pain I'm experiencing. Sometimes something good happens and I'll be able to earn back a spoon for that day, but I can't count on that. I have to plan my day to try to use the fewest amount of spoons. I have to carefully plan meals as I can no longer eat whatever I want. I can't just throw whatever into my lunch tote and go. I have to consider the pain I'm in when fixing lunch and pack accordingly. The past few days I have been grinding my teeth so violently (even with my splint in) that it wakes me up. Each time this happens, it costs 1 spoon.
I have friends from the TMJ group I belong to who have far fewer spoons than I do each day. I feel fortunate to have as many spoons as I do. This whole thing has made me feel fortunate that I have as much as I do. There are things I used to take for granted that I can't anymore and the number one thing on that list is food. I'm trying to see the silver lining; maybe I can lose some weight.
People with a chronic invisible illness can not do all of the same things as healthy people. Take this into consideration before you judge someone. Even I need to learn this... I found out a my friend Erin's spine doesn't curve the way it's supposed to at the neck. This causes her a lot of neck pain. I've known her since August 2006 and I never knew this about her. Just goes to show that people have more on their plates than we often know about.
I want to say that I did not write this for people to throw me a pity party. I don't want anyone to feel sorry for me. I am not complaining. It's the hand I was dealt. I write about this because it helps me cope. I write about this because I think it helps others with the same condition know they are not alone.
Thought of the Day: "I did as much research as I could and I took ownership of the illness, because if you don't take care of your body, where are you going to live?" - Karen Duffy
I definitely need to start taking better care of my body. Better care can lead to a happier, healthier me which can possibly lead to less pain. It certainly can't hurt to try!
For more information about The Spoon Theory, read an article written by the woman who developed the theory :
Wednesday night I participated in a live chat with quite a few people who have TMJ. The chat was facilitated by the founder of TMJ Hope, Stacy Stone and was held in honor of reaching 2500 likes for the Facebook page. During the hour-long chat I learned a lot from others who have TMJ and I started to connect with everyone, experiencing the beginnings of friendships. Hearing (reading) all of the stories both comforted and scared me. Most of them have had or are considering surgery. My journey has not reached that point and I hope it never gets there. I'm trying not to stress about it. If I have to have surgery, then I have to have surgery. I will face it when I get to it and not a moment before.
During the chat Stacy talked a little about a 4-week interactive course called Beyond Hope. She is running this course to help those with TMJ learn to thrive with it. Each week the course will focus on a different aspect of TMJ - setting goals, tools and techniques, food and exercise, and emotions, mindset, and relationships. Based on the chat and what I had read about the course, it sounded like something I really wanted to do. I was thinking it might help me learn what to expect on my journey and how to begin dealing with this as they happen instead of after they happen. But I wasn't sure I could swing the fee for the course, so I decided not to do it.
Stacy announced during the chat that she would be giving away two free spots in the course. At the end of the chat she gave away the spots. I was surprised when the first name Stacy said was mine! I won a free spot in the course! I am looking forward to beginning the course this Tuesday. I think I will make some friends in the course but I will also learn some valuable information to help guide my journey.
Throughout the course I plan to post entries to my blog about what I am learning. One cool thing is that the course will end right before I go on vacation with my parents for my birthday. I'm positive this will help me have a fantastic birthday.
Thought of the Day: "A journey indeed, is an emotional roller-coaster." - Ana Monnar
Yes, yes it is. But without the ups and downs, would it still be a journey? I expect the ups and downs. I only hope I have the strength to make it through them.
I talk and I talk a lot. My mom says that once I started to talk I never stopped. She's right. She even has a photo of me wearing her heels, some jewelry, and holding a phone. I was about 3.
So who do I talk to all of the time?
I talk to my bunnies (and other animals).
I talk to (and often yell at) the TV.
I talk to inanimate objects - for example I was talking to the smoke detector when it kept beeping at me last night. It needed a new battery but it decided the new battery I gave it was no good.
I talk to plants.
I talk to my car.
I talk to the characters in the book I'm reading.
I talk to the audiobooks I listen to in the car.
I talk to myself.
I talk to myself in the shower.
I talk to myself when I shop.
I even talk in my sleep.
On several occasions my mom has looked at me and asked,"Do you ever stop talking?".
No, no I don't.
Now I talk to make a living because I am a elementary school computer teacher. I suppose it was meant to be this way. I used to teach my barbies and stuffed animals (more talking). So I've never really noticed this before but this past week I found my jaw getting sore from talking. It didn't help matters that I kept yawning. I'm still wearing my MORA day and night, but some days I don't get my teeth brushed before my students come in after my lunch, so I spend the afternoon without it. This is usually when my jaw gets sore, but sometimes it happens even when I am wearing my MORA. I think I'll start paying more attention to this to see if there is anything to it. I'll certainly discuss it with Dr V if it continues to be a problem.
Talking is not one of the things that I thought would be difficult for me on this journey. I'm not surprised, though. Every day brings new challenges and successes. I am hoping that as we move along in the school year I will be able to be quiet more. Students will be spending their time working independently on their projects rather than listening to me. Right now I am having to go over classroom rules and procedures and the basics of the programs we will use. I am also answering the questions my students I have. I teach approximately 450 students in the course of a week. It can be a lot of extra talking when I have to answer the same question multiple times from children in different classes.
Mental note... Stop talking to self. *serious face*
ahahahahahahahahahahah Yeah, okay. Like that is going to happen. Seriously though, I need to figure out something so this doesn't continue to be a bother.
Thought of the Day: "One advantage of talking to yourself is that you know at least somebody's listening." -Franklin P. Jones
As I was searching for a quote to use today, I read a lot about how people who talk all the time say nothing. "As great minds have the faculty of saying a great deal in few words, so lesser minds have a talent of talking much, and saying nothing." -Francois de la Rochefoucauld. This made me start thinking about my talking habit. I realized that everything in my "talking list" is different ways I talk to myself. I do talk to people but I listen more than I talk. I can be quite the wallflower in social situations (but that's a whole different topic we don't need to discuss). I'm more likely to talk when I am one-on-one with a good friend or when I am with my parents (in other words, people I am close to and who understand that it is a part of me). "You aren't learning anything when you're talking." -Lyndon B. Johnson. How true. Maybe that's why I am often quiet around people - I like to see what others have to say but I also like to keep my opinions and knowledge to myself. One last thought: since I talk to myself so often, that might explain why I like to blog. :D
I saw Dr V today. I've been seeing him every week since the end of July. I got the MORA on August 14th. I've had 3 "adjustment" appointments since then. Today he told me I'm good for a month. He said to call if I have any problems, but otherwise I just need to keep wearing it day and night. When I see him on October 4th, he will evaluate my progress to see if I'm ready to switch to nights only. This is super exciting to me, but I'm certainly not going to be putting the cart before the horse. Dr V is impressed with my progress. He told me he can tell I am wearing my MORA as instructed. He also called me his "star patient".
Thought of the Day: "Be determined to handle any challenge in a way that will make you grow." - Les Brown
I think all of us have new challenges every day, but when you live with an invisible illness, such as TMJ, things can be that much more challenging. With determination we can make it.
Since the beginning of my journey with TMJ (before I even knew I had it) I found there were foods I sometimes had difficulties eating. As a general rule if I can not eat anything chewy/tough or hard/crunchy. As with any rule, there are exceptions. But if you think about it, this eliminates quite a bit of food from my diet. I feel like I'm facing the same situation I did right after I had a tonsillectomy in February of 2009. For two weeks all I ate was popcicles made from real fruit and mashed potatoes, with tiny bits of chicken and other small foods when I could.
One of my all-time favorite candies is Haribo Gold-Bears (in the photo). These are the only gummy bears I will eat (I'm a gummy snob), but now I won't be eating any gummy bears; it puts too much pressure on my jaw. Oh and you can't suck on a gummy bear like you can a mint and have it get smaller and smaller. Nope. Doesn't work. I tried.
Some days are better than others, especially since my treatment with the MORA began. However, I find that many foods I used to enjoy are no longer, well, enjoyable. I've been compiling a few lists of foods I can and can not eat. Below are my lists. Sometimes foods on one list may find themselves on another list.
Haribo gummies *tear*
carrots - raw
breads with hard crusts (french bread) or a chewy texture
uncooked flour tortillas
things you have to bite into such as an apple (but sliced up is okay)
no big bites, no matter what it is
whole nuts such as almonds
Be Careful List
anything that requires a lot of chewing per bite
many candy bars
Most things in small bites
bacon (if it's cooked right)
boiled peanuts (yay!)
hot dogs (with small bites)
In a crazy sort of way, I like having to watch what I eat. It has made me a lot more conscious of what I put in my mouth. I'm really hoping I can piggyback off this and work on cutting down my sugar and starch intake. I'm trying to eat more healthy foods and lose a little weight. I certainly think twice before grabbing a snack - one because I'll have to take out my MORA and then put it back in (I'm lazy. That's an annoyance), two because sometimes I just don't want to work my jaw. Lots of eating/lots of chewing - whether easy to chew or not - can tire out the jaw. Tired jaw = unhappy Shauna.
So it seems most of what I can eat is soft. While most of what I eat is soft, I can eat a lot of things if I chew slowly and take very small bites. I don't want to be on a soft foods diet for the rest of my life. My parents made ribs the last time I was there. My mom chose boneless so I wouldn't have to bite off the bone. Because rib meat can be chewy, I dipped mine in a lot of sauce. This really helped. I didn't feel like I was going to die of chewing.
As I figure out more of what I can and can not eat, I will update this entry.
Thought of the Day: "So long as you have food in your mouth, you have solved all questions for the time being." - Franz Kafka
Hmmm. Not sure how I feel about that one. I know it solves whether or not I can eat it, but all questions?
Update 9/15/12 - I tried popcorn today for the first time since my diagnosis. At first I thought it was going to be fine... The more I ate, the more it hurt. I tried to discern why it was painful. Was it the amount of chewing? Was it the way I was chewing? Was it the texture of the food? It almost seemed to be a combination of things. I ate the popcorn about 2 hours ago. My jaw is still sore. Maybe I could handle popcorn in small quantities but definitely not a lot at one time.