Shirlett's TMJ Story!

TMJ STORIES!

Candle of Love, Hope and Knowledge

This candle signifies the light we wish to shine on the

Knowledge needed, to continue our struggle against our

pain, suffering and injustices...Please, don't let the light go out...

FOR ANGELS UNITED WE STAND TOGETHER!

Angel's United On TMJ!

We need justice. We need toleration, honesty and moral courage.

These are modern virtues without which we cannot hope to

control the forces science has let loose among us.

-I.A.R. Wylie

SHIRLETT'S STORY

This is what I looked liked before the TMJ ruined my looks and my life!

The summer of 1992 was the beginning of my medical hell. I began to have problems with earaches that seemed never completely to go away and would make appointment after appointment with my family doctor. Three to four times he told me I had no earache. This continued through the summer and I did what I could to prevent water from getting into my ears. The problem subsided and would only hurt every once and a while and I would blame it on other things believing my ears did not hurt. I was beginning to get a sinus infection; I was having a very bad headache that was extending into my face and ears. When the problems continued, I returned to my family doctor wondering if he thought I was a nut, and he suggested I be evaluated by an ear, nose and throat specialist. I did so and was told there was nothing out of the ordinary on any of my scans.

The problems continued, my headaches became stronger and more frequent I began to have muscle spasms that were in my face, neck and shoulders. When the pain would come on, I would feel as if I was going to pass out. I could mentally see lighting flashing through the top of my head and throughout my face. I returned to my family doctor who decided to send me for an I am beginning to think, oh my gosh, do I have a brain tumor The headaches, muscle spasms, facial pain ear pain. The MRI was done and they had called the results directly to my family physician while I was still at the imaging center. The doctor who did the MRI came into the room where I was waiting and asked if I knew what TMJ was? I shook my head no. He asked if I had recently had any serious trauma to my head or neck? A car accident, fists fight etc. I again shook my head no. He began to explain how my jaw worked. He explained the "disc" between the top and bottom jaw and than told me, the "disc" on the left side of my jaw was gone. The muscle had been pulled forward and was between my top and bottom jaw and every time I bit into something hard or tough (steak) I was injuring the muscle and therefore the spasms would begin.

One night my jaws locked open. I was so freaked out I could not even think straight. My fiancé drove me to the emergency room and they called the oral surgeon on call that night. He was able to get my jaws unlocked and told me to call his office the next business morning and schedule an appointment with him for a follow up.; For my first appointment with this oral surgeon, he did the first panoramic on my face and told me my wisdom teeth were impacted and I had cracked all of my teeth in the back of my mouth from grinding. I had also broken a tooth in half in the back of my mouth. He told me I did not have TMJ and that my teeth were the source of all my pain. He stated the broken and cracked teeth would have to come out and my impacted wisdom teeth were the main cause of all my pain. He told me once all of the impacted, broke and cracked teeth were out all of my pain would go away.

I went though with the surgery on Friday, December 31, 1997, an allowed him to remove teeth on my top row that I just was not one hundred percent sure really needed to come out. But he was an oral surgeon and this was what he did so I agreed. When I awoke from the surgery I was shocked at feeling no pain for the first time in months. I was numb and still groggy from being put to sleep and just wanted to get home and crawl up in my bed and sleep. I had been advised to not drink anything through a straw and no smoking. That night my fiancé and I were sitting at the kitchen table talking about how strange it was that I my face had not swollen up like I was storing nuts for the winter. The numbness was being to wear off and I was beginning to feel pain. Pain in places I had never felt it before and much stronger than it had ever been. I had filled the prescription for pain pills and about eight hours after surgery I had to take my first one. As the numbness wore off, my pain level only increased. At times I thought I was going to have a heart attack from the pain. My fiancé called my Mom and asked her to come over and look at me since I was not swollen as we were told to expect and my pain was just off the charts. I could barely open my mouth and if I tried pain would shoot through my face, neck and ears. What a wonderful way to spend your first New Years Eve together. I spent the new year in bed. On Monday morning I called the oral surgeons office and was told everything was normal and was instructed to continue taking the pain pills. I asked about not having very much swelling and was told everyone was different. The only swelling I had was the areas in front of my right and left ears and it felt as if my ear canals had swollen shut. I know now that my jaw joints were swollen.

I called the oral surgeon numerous time and attempted to schedule appointments. I was able to get an appointment and told him all of the pain and sensations that I was feeling that had never been there before the surgery and he told me there was nothing wrong with me and it was all in my head. Two months after the surgery my pain level was so intense it was interfering with my work. I was slurring my words, my vision was blurring, I was having hearing problems. My pain was out of control. I finally was able to get another appointment with the oral surgeon. I explained my pain, how it had consumed my face, the areas in front of both my ears were so sore I could not stand to touch my face. I was unable to brush my teeth without it bringing me to tears, after I ate and at times while I was eating my pain would come in sharp stabbing pains across my face into my ears and down my neck. I could no longer brush or shampoo my hair without crying out from the pain. I could barely open my mouth and if I forced it open the pain was indescribable. I now had episodes where the left side of my face would go numb, my eye lid and mouth would droop. This was not like I woke up that morning in this condition. I would be at work, in a meeting, talking and all of a sudden my mouth would not form the words, I could not open my eye lid the entire left side of my face would just go numb and be very cold. I was accused of drinking on the job and sent home a couple of times when I had not even left the office for lunch. It came to a point where I just stopped eating anything I had to chew and drank slim fast. When I described these problems to the oral surgeon and asked if there was a remote possibility that I really could have the TMJ that the doctor who preformed the MRI had brought up, the oral surgeon leaned over so that we were eye to eye and told me to my face that I did not have TMJ, he did not know where I had learned the symptoms and signs of TMJ, but I had obviously memorized them and there was no way I could have TMJ and that everything was in "my head" and he thought I was trying to extort narcotics from him. I was shocked. I knew what I was feeling and I knew there were things going on with my face that had never ever in my life happened before Friday, December 31, 1997. I immediately contacted my family doctor and his office staff got me in immediately. My family doctor prescribed the first of my pain pill intake. The battle with my insurance company was on.

I really do not know what transpired between my family doctor and the oral surgeon, I was called by the oral surgeons office and they scheduled a "follow up" appointment at which time he again told me I did not have any of the signs or symptoms of TMJ but he was going to give me a referral to an oral surgeon who was fresh out of school and was current on TMJ treatment to rule out TMJ in my case. He referred me to an orthodontist who was right out of school and had no experience in oral surgery. My first meeting with him he told me to my face he did not know why I was there, he explained what he knew of TMJ and the treatment for TMJ and told me the only thing he could do for me was to make me a bite brace to wear twenty four hours a day, seven days a week. The making of this bite brace was the nastiest process I have ever had to go though. I still believe today that I can take the chemicals used to make these devices. If you have ever had acrylic nails or been in a facility who places them on the fingers, imagine instead of placing the product on the nails, scoop up a half of a hand full and place it in your mouth, bite down and hold until the "impression" takes. Had there been any type of bacteria or fungus in my mouth I believed it to be dead after that experience.

Once the impression was completed, the doctor began making the actual brace. This process takes up quite a bit of time. It was not like going to the doctor's office for an appointment. Waiting for your name to be called and going back. The first time I went for a fitting I was in the chair for three hours. They put the brace in, check your bite with carbon paper, add more of the acrylic product, let it dry, and then check your bite again. The brace then has to be sanded down, just as they do in a nail salon, to get the "ruff spots" out. If your bite is still not where they want it, you repeat the process all over again. Now, the doctors are not trying to get you a pretty smile while they adjust your bite, they are manipulating your jaw to release pressure and allow your jaw muscles to relax I have never had a brace in place and closed my mouth down on it and been comfortable. Initially, I could not talk where I could be understood with my brace in nor could I stop myself from drooling while it was in. I had been instructed to leave it in as much as I could during the day at work (yeah right) and once I left work I placed it in my mouth and attempted to leave it in until morning. I cannot count how many mornings I would wake up and the brace was all the way across the room. I do vaguely remember one or two nights awaking in the middle of the night, taking it out of my mouth and trying to get the brace as far away from me as possible. I could eat with this brace in my mouth much less smoke a cigarette. I had been placed on a soft food diet and was told absolutely no chewing. Well that just limited my food intake.

The "brace" treatment went on for five months and I was not getting any relief nor did my scans show any improvement. My insurance company refused to pay for any of my TMJ treatment stating it was not medical it was cosmetic and I had already been evaluated by an oral surgeon who is a specialist in TMJ and his final report was I did not have TMJ. My medical bill was racking up with this doctor and I was making $200.00 payments every two weeks on the bill.

Out of money and very frustrated, I stopped treatment with this doctor and stopped wearing the bite brace. Over the next few months I would wake up in the morning with parts of tooth between my gum and cheek. My face began to become distorted at time. I was a constant fixture in my family doctors waiting room. I could not take pain medication and drive much less work so I was only able to take the pain pills at night and that was mostly on Friday and Saturday nights since I would not have to be at work the next day. Sleep was my only escape. My family doctor was still convinced I had TMJ. He had done the order for my first MRI and that doctor had confirmed what my family doctor had thought all along. I had TMJ. It was just the oral surgeon who specialized in TMJ who said I did not have TMJ. My family doctor tried everything he could to send me to another oral surgeon who had treated TMJ patients in the past and was very well known and liked in the medical community. By this point I was terrified to go to another oral surgeon. I was in nauseating pain, lacking sleep, confused, attempting to raise my young child and keep my relationship together. How do you tell a seven-eight year old child do not touch Mommy you will cause Mommy more pain, Mommy cannot kiss you because it hurts her, Mommy cannot hold you to her for fear you might move around and accidentally hit my face? HOW????

Now we were back to the TMJ thing again. It took two months for my family doctor too win the battle against the insurance company so I could be evaluated by this oral surgeon who specialized in TMJ (heard that one before!) due to my insurance company again was arguing TMJ was a cosmetic problem and I had already been to a specialist for a TMJ evaluation and I did not have TMJ. I sat right in front of my family doctors' head nurse and watched her call the insurance company trying to get me the referral I needed. She would call, ask for the referral, explain why the doctor was requesting the referral and wait until they came back on the line and give her a denial. She would thank them, hang up the telephone and call again. She told me she would continue until the insurance company gave me the approval. It took two days and I do not know how many telephone calls for her to get the authorization for me to be evaluated by the oral surgeon. I later found out when the doctor's office calls that insurance company for a referral they get an "operator" who receives the information and decides if the request is to be granted or not. Not a doctor or specialist who would have any type of medical knowledge. Just some person who is basically working in a call center most likely making minimum wage in a dead in job.

This is the person who gets to make a decision about MY medical treatment and what treatment I can and cannot have. That is totally absurd. This nurse also told me she does not think she ever spoke to the same person twice. I really believe due to the length of time I had to go without a proper diagnosis and proper treatment it only allowed my TMJ to affect my body physically. During that two-month battle with the insurance company, I began to slur my words as if I was drunk every waking minute. I would have spasms in my face so strong that the left side of my face would be paralyzed and be useless any where from fifteen minutes to two hours. My face began to swell when it felt the need to do so and as much as it felt it needed to. At times it would swell so much it felt as if my skin was splitting and my skin would bruise. I would awake in the morning looking as if I had been in a bar room brawl the night before. The pain was so intense in my face that I had to force myself out of bed Monday through Friday so I could pay my bills. I also had an eight-year-old daughter of whom as a single parent I had to take care of.

The attorney I worked for was questioning me as to if I was drinking on the job and if I had a drinking problem? I remember sitting in my bosses office on a conference call with my boss sitting behind his desk and six other attorney's on the phone when I had a spasm. My face went limp and I could not speak to answer the questions by the other attorney's. Drool was running out of the left corner of my mouth. I could do nothing but put my hand over it and try to catch it. He ended the call and asked me what was going on? I explained I had not got the treatment my doctor had requested due to the insurance company (that the law firm was paying for coverage with) had decided my TMJ problem was cosmetic and I had already been evaluated and was found to not have TMJ. The Law Firm gave me four days off with pay to go home and rest. I was in pain and very humiliated. My vision begun to blur more frequently and I had a blind spot on the outside of my left eye. I was frightened to drive myself or my daughter anywhere for fear of not seeing another car, having a muscle spasm or being struck with an intense pain that would disable me. It was a long drive to and from work everyday due to I felt I had no choice but to be very cautious and my attention had to be only on me driving.

I made another appointment with my family doctor and he referred me to an eye doctor to have my eyesight examined. My eyesight was normal and they did find the blind spot about which I was complaining. The eye doctor stated a nerve had to be pinched somewhere in the left side of my face and that was causing the blind spot and he thought it might have something to do with the problems I had been experiencing with my jaw.

My first appointment with the oral surgeon was not as I had hoped. I thought I would go into this appointment and he would tell me there was a quick and easy surgery for my problem with very little down time and all of this would be in the past. Ha Ha. First, he informed me I did have TMJ and due to lack of proper treatment and the length of time the insurance company took in giving me an approval he needed to do more scans and another MRI to see if more damage had occurred. Then he told me surgery is the very last option with TMJ. We would begin with a splint and I could not use the old one. A new one had to be made. I thought here we go again.

Within a couple of days I had my brand-new splint along with exercises I was to do each day and again was placed on a soft food, no chew diet. I began to try to find anything and everything I could on this TMJ thing they told me I had. There was very little information. I had begun to keep track of my pain, where I had pain and the "other" sensations I was experiencing that I had never had before. I had noticed right before the pain would start throbbing through my jaw joints, I would have this sensation of my teeth being pushed together. I would have to shove toothpicks in between my teeth to release the pressure. When I brought this to the oral surgeons attention, I was told there is very little information out there regarding TMJ and he could only give me the information he had from his experience and patients. I did not know when he said experience he indicated himself. Yes, I had an oral surgeon who has TMJ. I had weekly appointments with this oral surgeon and oddly enough found it comforting to show up for an appointment and see him with his splint in.

During the four months of my splint therapy, I did as I was told and my pain only continued to increase. I began to notice it hurt every time I smiled, coughed, yawned, brushed my teeth and sometimes when my daughter was allowed to give me a goodnight kiss I could feel the pain radiate into my left ear and eye. I had to limit how much time I could spend on the telephone or meeting with a client. There were many days when I could not remember what it felt like not to be in pain. It is like having a headache so intense that you cannot move and at that moment in time you cannot remember what it was like not to have a headache or what it was like to be pain free. After four months of aggressive treatment they told me the splint therapy was not working and my left jaw joint was only becoming worse. I would have to under go surgery. I was at the last option for TMJ treatment. Why did this happen to me? Me who only went to the doctor when I had a problem and it was always fixed. Me who had my yearly physical and exam like clockwork. I had done everything right and now I have to have surgery?

The oral surgeon scheduled my first TMJ muscle flap of the left joint for March 3, 1999. I was a little nervous but kept thinking this has to be done and when it is over all the pain and strange things happening to my body will be gone. I will be cured. I will have my life back. Well, the oral surgeon shredded that happy thought right up. He told me when dealing with the jaw joints, they guarantee nothing. He guaranteed nothing. We would just have to wait and see what the outcome of the surgery would be. He also explained that all of the CT scans, MRI's and panoramic were only images and he really did not know what he would find until he opened me up and was able to look at my joint and examine it. March 3, 1999, we checked into the hospital and everything was moving on schedule. The oral surgeon and his partner came into my room, we went over the surgery again and explained I would be under for around three hours. Ok. I was ready to go. I was very shocked to awake and find that only an hour and fifteen minutes had gone by. I thought wow, it must have been much better inside there than they had thought.

I remember looking at my family standing around the bed and they looked nervous. I asked my mother what had happened in there and she said the doctor would be in to explain everything to me. He came in and started telling me they had opened up the left side of my head to expose the joint. The damage was so great he did not feel he was capable of doing anything as far as repairing the joint or continuing with the planned surgery he also found seven cysts in and around my left jaw joint. What? I was in shock. All of this for nothing? He stated he would have to send me else where for treatment due to the damage in my joint. After he left and I had calmed down a little, my mother told me about twenty minutes after they took me into surgery he came back out to tell her is was much worse than he could have ever expected. He did not feel comfortable continuing with the planed surgery and at this time he just wanted to close me back up.

My Mother and fiancé talked with him for a few minutes and basically begged and pleaded for him to try and do anything to try and ease some of my pain. He finally consented and said the only thing he could try and do was clean up the joint (arthroplasty) and hope that the procedure would relieve some of my pain until he could get me in at another facility.

This surgery was to be the first time I would almost die on the operating table. An antibiotic that I did not know I was allergic to, had been placed into my IV to help fight infection and I stopped breathing. My wonderful insurance company only took eight months to give an approval for me to be seen at Shands Hospital in Gainesville.

During those eight months I continued to try and find more information regarding TMJ and treatments and I found a TMJ support group on the internet. Finally, I was not alone and I was not crazy. I continued to see the oral surgeon and he did everything he could to help my pain. We talked about different types of treatment that I might fit into and assured me once I got in at Shands in Gainesville I would be very well taken care of. I came across information regarding the rib graft reconstruction surgeries that had been done in the past on TMJ patients and spoke with other in the support group who had already had rib graft reconstruction.

I spoke with the oral surgeon about this surgery and would I be a good candidate for this type of procedure? He made contact with an oral surgeon he knew that preformed this type of surgery (my insurance refused to let me go to him due to he was out of state) and after review my chart gave a confirmation that I would be a good patient for this type of surgery. I thought I had it under control.

By October,1999 the pain was so bad there was not a day that went by that I did not think about committing suicide. I would try to get control over my pain by writing in my journal. If I did not have my daughter, I would have killed myself because of the pain. I held the bottle of pain pills in my hands often. I made myself continue my life because of my daughter.

There were times when the pain was so great that I really thought I had died. Then I would remind myself, I would hope if I were dead, I would not be feeling PAIN! I wanted to take a hammer to both sides of my jaw. To smash and shatter them. The pain was so unbearable. The days came more and more when I thought dying would not be so bad. The pain could get no worse. I was so very wrong. It was getting harder and harder to live day to day. My hopes and dreams were crushed a little more each day. My blind spot continued and it seemed my vision was becoming worse. I could not see to drive home at night from work and found it becoming more and more difficult to see the television clearly. I made an appointment to have my vision checked again. This time I was told the cause of the blind spot (black spot) on the outside of my left eye was unknown and my vision was no longer perfect and I would need glasses. I could not wear the glasses due to I could not stand any pressure or anything touching the left side of my head. I was given contact lenses. These did not make the blind spot go away but they did help me see much better.

My first appointment in Gainesville was November 11, 1999. I went in and had a very intense examination and then met with the head oral surgeon. I told him I wanted a rib graft reconstruction. He told me I was too young and there were other options available to me. Muscle flap surgery and Jaw implants. I was not happy with this but I was in pain and wanted relief. At this time in my life of TMJ, if someone had told me to get on a jet and fly around the world three times and my pain would be gone and my TMJ would be cured, I would have found the money to do it. Shands scheduled my first surgery of many at their hospital for three weeks later. I developed the flu and they canceled surgery. They could not reschedule surgery until February 25, 2000. They told me that I needed to quit working, rest and relax so I would be prepared for the surgery.

I contacted The Office of Social Security Disability to apply for disability and was told TMJ is not a disabling condition. So, I continued to work. By this time I was taking seven Lortab ten's a day along with flexeril ten four times a day and alternating between three different anti- inflammatorys'. I was petrified I was going to mess up something very bad a work.

I checked into Shands Hospital on February 24, 2000. I was very scared and worried. I had been having bad dreams that the surgery would not go right and I was scared about being put under due to the amount of medication I had been putting in my body and after the incident during my first surgery with the antibiotics. They told me pre-op took about thirty to forty-five minutes and then we could go across the street and check into our hotel room. My pre-op took five hours. I knew something was wrong due to the amount of interns and oral surgeons that came in and out of the examining room I was in. When I asked what the problem was, I was told they (intern’s) were waiting for the head doctor because they thought I had fractured my condyle and they needed him to review the scans. He came in and after reviewing the scans did not seem very happy. We were told to go to the hotel and call back to the hospital at 7:00 p.m. for instructions. I called and was told to be at the OR check in area at 7:00 a.m. At 6:00 a.m. the hotel phone began ringing. I answered it and it was the OR telling me I was to have been there at 6:00 a.m. and I needed to get over there now. We rushed out of the hotel across the street to the hospital.

I checked in and everything went normal until the ansteialagtest came to talk to me before he gave me medication. The nurse walked by and told him not to talk with me yet because the doctor's had not decided if they were going to do my surgery yet. I thought she had me confused with another patient. They had me re dress and get out of the bed. Then directed us to sit in some chairs by a wall. Then I saw all three of the oral surgeons walking towards us. This did not look good. I had a very bad feeling. The oral surgeon's said they had stayed up most of the night talking about my case trying to figure out what they could do and they felt at this time, that they could not do anything. They needed time. The head oral surgeon explained they could not even perform the muscle flap surgery due too between November 1999 and February 24, 2000 I had lost more than 80% of the bone in the left side of my face/jaw. The bone that they had planned to attach the muscle to was gone. I was told this kind of bone loss is normally seen in persons with severe arthritis and it takes seven to eight years for that amount of bone loss to take place. They were also concerned I might have a tumor growing in my left jaw joint and asked if I would go over to CT and have a scan done before I left Shands to go home. They said they would not be able to perform surgery that day and would have to come up with a plan. I went and had the CT done and I cried almost the entire six-hour drive back home. I thought I had to still be asleep and dreaming. This was not happening. My surgery had been canceled twice now. I was going to have to live with this pain longer. It had to be a very bad nightmare.

By March of 2000, my pain was so intense I was dropping things and at times I felt as if I would pass out. The pain pills only increased in dosage and all I wanted to do is sleep. I was very nervous about the upcoming surgery. After all, two had already been canceled and I really did not think I could live with the pain much longer. On March 3, 2000, a doctor called from Shands and left a message on my answering machine telling me surgery had been rescheduled for Wednesday.

March 8, 2000 at 8:00 a.m. He stated the FDA had stopped the use of implants and they would use one of my ribs to replace the bone lose and if I had any questions to please call him at his home. I did call and he went through the entire surgery procedure that was to take place. I was in shock that night and for most of the weekend. All kinds of thoughts and worries were running through my mind. Would this surgery work? Would the pain be gone for good? How long would I take to heal? When would I be able to return to work? I was at a point where I think I really did not care. I was tired of being in constant pain and taking so much medication. I was very depressed and unhappy with my life. I really did not care if I lived through this surgery or not and I really did not care what was done to me. I just wanted the pain to be gone.

We left home at 11:00 p.m. on March 7, 2000, and began the drive to Gainesville. I had just lost my Grandmother in January and instead of sleeping for the six-hour trip, my mind raced 100 mph with thoughts and worries. I talked to my Grandmother, I cried and I begged The Great Spirit that if this surgery was not going to work, then please let me die during the operation. I had no fight left in me and did not want to have to live as I had been living for the rest of my life. I had no life. I went through pre-op and was told to be at the hospital at 7:00 a.m. I stayed up most of the night scared the hospital would call and tell me the surgery was off. We arrived at the hospital around 6:30 a.m. and everything went smoothly. I was rolled into the operating room awake and the head oral surgeon began to introduce the other doctor's in the room and the interns who would be participating and watching my surgery. The second doctor I was introduced to leaned over and began explaining he would be the one to take my ribs out and where he planned to take the rib.

I asked The Great Spirit again, that if this surgery was not going to work than please do not let me wake up from it. I know we are not suppose to ask Great Spirit for anything other than guidance, understanding and tolerance, but I could not believe Great Spirit would want me to have to live in and with so much pain. I now know my faith in The Great Spirit was being tested. The very last thing I remember is the head of oral surgery leaning over me, holding the oxygen mask to my face and telling me he would see me in a little while. I was out. I awoke in a hospital room and was told by my mother I had been in surgery for about nine hours. Once I was fully awake, I felt a little excitement due to I did not feel pain in my jaws only my chest was throbbing where they had taken the ribs from. The doctor's told me they believed the surgery to be a success and everything went great. What they had thought to be a "tumor" had really been another cyst within the jaw joint and it had been removed along with two other smaller cysts.

I spent two days in the hospital and was released to go home. The blind spot on the outside of my left eye was gone and I could see very clearly without my contacts in. It was as if my eyesight had come back perfect after the surgery. I returned to Shands on the 20th of March for my first postoperative check up. For the first week after surgery, there had been no pain in either one of my jaws, only my chest. I took myself off all medication including the pain pills four days after the surgery. My chest hurt, but the pain was no where as intense as what I had been experiencing in my jaws before surgery. Then pain in my head slowly began to return. The doctor's assured me everything was ok and I would be a little tender for a while and set my next appointment for the third week in April. I began trying to return to work and found it difficult to work a full day much less forty hours a week. One month after my surgery I still felt as if something was not right.

During my April check up I was told everything was healing right on schedule and the surgery had been a success. I began having a feeling of fullness in the left side of my face when I would lean over or bend over to put my shoes on. The doctor's stated the "feeling" I was having was the rib bone that had been placed in my face. Since I had such a great bone loss and was not use to having a "face full of bone" in my face I was assured it was ok and I would get use to it again. One Saturday, towards the end of April I was sitting out side and all of a sudden had a very sharp pain in the left side of my face and then it felt as if my teeth were being forced together. I jumped up and ran in the house thinking I had been stung in the side of my face by a bee. Two months after the surgery I knew something was very wrong. I felt pain in both joints and the popping, locking and bone grinding against bone sound had returned. The pain was worse that it had ever been before. I had developed a little lump on the left side of my face, which began to grow.

My eyesight began to grow fuzzy again and I had to begin wearing the contact lenses again. Under my left cheekbone my face had sunk in as if there was nothing there to fill my face out. My family doctor placed me back on pain medication once again. I felt like a failure. I became even more depressed as the pain grew. I was angry with myself for having hope that this surgery would be the one and scared I might have damaged my jaw by returning to work. Social Security Disability was still claiming my TMJ was not disabling. I had reached a point where I had no choice but to stop working and pray we could make it off of my fiance's income alone. By the end of May it was as if I had never had the rib graft reconstruction. The pain was back stronger than ever and it seemed to grow every day. I was unable to open and close my mouth without the bone crushing sound in my ears. The pain was shooting through my face, neck and shoulders. All of my muscles in these areas felt as if someone had reached inside my body grabbed a handful of muscles in a fist and tried to rip them out of my body. My face stayed swollen and I was unable to wear my contacts dues to my eye's lids were so swollen.

The TMJ "twitch" had returned. My pain pills were useless against the pain. I could not really grasp the fact that I was on the merry go round again. I was tired and did not have the energy or strength to fight this time. The "lump" on the left side of my face continued to grow. I wanted to know when the pain would go away. I prayed, begged and pleaded for an answer. I only received silence. Once again, I applied for Social Security Disability this time I was given an appointment in the local office. On the day of the appointment my face was very swollen. During the appointment the interviewer asked me "what was wrong with the left side of my face," I explained to her it was swollen from the TMJ. At the end of this interview, she told me my TMJ was not disabling and if I would not take so much pain medication there was no reason why I could not work. I appealed the decision.

When I returned to Shands on June 19, 2000, the first thing the doctor's noticed was the "lump." I was informed it should NOT be there. They asked why I was back on pain medication and I told them I was in pain. I was sent for x-rays and a CT scan. The doctor's then discovered four of the six pieces of my rib that were placed in my jaw were gone. Just gone. One of the remaining rib portions was still in place with a screw hole but no screw. The other four screws were just floating around somewhere in my face. They were very concerned over my "lump." I asked if it was cancer and the response was no. The rib graft would have to be redone but first they had to find the cause of my bone destruction and try and stop the cyst. As the days went by my depression grew. I could not cry, scream or yell to release all that was building up inside me. I had no desire even to get out of bed. When I did sleep, I dreamed of being pain free and having my life back.

The end of June the doctor's decided they needed to perform exploratory surgery to try to figure what the "lump" was. I saw Dr. D. and all of my rib bone has been reabsorbed. NO RIB BONE left in my jaws at all. It is all gone. So now my screws are floating since there is no bone for them to be screwed into. Just something else to deal with. My pain level is off the chart right now. The reason I have been so "sick" to my stomach is the pain medication. Mt stomach just cannot handle it. I HAVE to have the pain medication or I will kill myself from the pain. I am now to the point that the only thing I will do is bathe. I want to stay in my Pj's, I do not have the energy to leave the house. It feels like it takes all my energy to walk from the bedroom to the living room. I have crawled to the living room. Just too much energy expended to walk. If I never had to leave the house again, right now, I could care less. My face is throbbing. It feels like fire crackers are exploding within my face. Gena is home sick from school today, which is fine with me. At least I am not alone all day and she has crawled up in bed with me so we can snuggle and sleep

The attorney I had worked for was still paying for my health insurance even tho he did not have to do so, he did it so I would not be without insurance and then the bottom dropped out from under me again, Shands no longer was accepting my insurance due to they had been unable to collect from the insurance company (mine was not the only case) even with pre approvals. They scheduled surgery for July 27, 2000. Shands called me the Monday before the 27th to tell me I would need to bring $2000.00 with me to cover the operating room. The oral surgeon had decided to waive his "fee." I would have to pay for the surgery. I explained I had no job and Social Security Disability was still denying my claim. The surgery was canceled.

The oral surgeon continued to call and check on me. We would take pictures of my face and E-mail them to his office. During one telephone conversation the oral surgeon asked me if I had applied for Medicaid since I had a very real and serious medical problem. I told him no. The interviewer at the Social Security office told me that my assets were too high for me to receive any type of state benefit. After two months of no income and being trapped in the house, I went to the Department of Children and Families and spoke with a worker there. She gave me some papers to have completed by persons outside my household and said she could find no reason I would not qualify for medical benefits. I did as instructed and did meet the requirements for Medicaid. I called Shands and gave them the information regarding my Medicaid and the date it would be active.

My pain level continued to increase and I reached a point where the Lortab pain pills no longer seemed to work. I was not sleeping due to the pain and stress. My family doctor and I discussed the Duragesic patches. I felt torn upon leaving his office. I wanted something to control the pain, I was so tired of hurting but in the back of my head was the fear of becoming addicted to pain medication. It seemed all of my medication dosage only continued to increase. And now here I was, no longer me any longer, a person whose life was ruled my prescription narcotics. I who maybe, maybe took two BC powders in a years time and who never put any type of narcotic in my body and only took antibiotics or sinus medication when all self medicating had failed.

My family doctor had not issued the patches to a patient. However, we felt due to my labs on my blood were coming back not so great that my kidney's and liver needed a break from all the pain pills. The first patch of 100Fgh was placed on my upper left arm Friday, September 15, 2000. By late Friday night I was feeling very sick to my stomach and thought maybe I had "caught" something while in the doctor's office. When I awoke Saturday morning, I was so ill to my stomach I had to allow myself to vomit.

Anyone with TMJ knows once you have TMJ there is no way to vomit without causing yourself even more extreme pain. I could not keep anything down and continued to vomit. After the second time I realized I was not feeling any severe pain in my jaw, it was just a dull ache and the vomiting did not cause me any extra pain. I thought to myself, well this patch must be working. I stayed ill all weekend and by Monday morning could not longer stand the vomiting. I called my family doctor and they told me to come on in. After checking me over and running a few tests we found out the first dose of the Durgeisc patch was to have been a 25 Fgh and then increase by 25 Fgh every three days until I was at 100 Fgh. Had I not allowed myself to vomit I would have over dosed. The excess was going into my stomach and causing me to fell so sickly to my stomach. Another hard lesson learned and we soon had the dosage straightened out.

The patches worked very well in controlling my pain but they also made me very drowsy. I found myself sleeping twelve to eighteen hours a day. I had no energy and no appetite. But, I was finally able to sleep. I was having to jump through hoops of fire to try and get my claim for Social Security Disability approved.

By August 2000, I was made to go see a psychiatrist due to my depression. At times I felt as if my mind was split in two. One side was the real reality going on around me and the other was the reality that my jaws and the extreme pain had caused. I really thought my jaws were slowly killing me. I knew I could not die from TMJ but I had decided I could die from the nonstop pain. I despised living like this. I thought about the different ways I could "drain" the new cyst myself. The psychiatrist thing was somewhat a joke. I got the feeling he was scared of me. Maybe from all the medication I was on, or maybe he really thought I was crazy and it was just me and him in the room. I went and saw my old oral surgeon just so he could look at me and he did not even want to touch me. So he just looked at my face. We talked some more about implants and I voiced my feelings about unnatural parts going into my body and I was really not comfortable with it blah, blah, blah. Around this time my hair on my head and arms began to falls out in clumps. I was also breaking out in whelps all over my body including my scalp.

The oral surgeon from Shands called on September 22, 2000, and told me the surgery had been scheduled for October 4, 2000. They agreed to allow me to have an MRI and my blood work done in Pensacola the week prior to my surgery so we would not have to drive to Gainesville for these to be done. We checked into Shands the day before surgery and it seemed maybe this time all would go smoothly. The oral surgeon felt the "lump" was another cyst. There were concerns how they would remove it. If the cyst were punctured there was the risk it would collapse and all of it might not have been removable. They told me the surgery would take place at 8:00 a.m. on the 4th. I had removed my patch that night and was given two Lortab ten's to take before bed. The morning of the 4th, I called the OR check in and was told an emergency had come in and they had pushed my surgery back to 10:00 a.m. We need not come over to the hospital until 9:45 a.m. By 9:00 a.m. I was beginning to go through withdrawals so we decided to go on over to the hospital. Upon arriving they told me another emergency had come in and again they had pushed my surgery back. By 11:00 a.m. I was sick to my stomach, sweating and had the chills. The check in nurse, with the persuading of my family members, decided I had to be taken up to the operating prep room. We were taken up and I was placed on an IV and the nurse began my surgery preparation.

I was there for a maybe an hour when the oral surgeon came and explained the surgery again. There were some concerns how I was going to be tube due to the lack of opening I had with my jaw. I asked if they were going to have to place the tube through my nose to do it after I was out. I remember being taking into the operating room and being very cold. The oral surgeon told me it was time for me to go to sleep and he would see me in a little while. The next thing I remember was waking up to a nurse asking me questions and I could not open my mouth to give her a response. I felt frightened and trapped. I do not know how long it took her to realize I was stressing over not being able to answer her or open my mouth. When she did grasp the situation, she told me they wired my mouth and just to lie back and relax, they were coming to get me to take me to a room. This trip I do not remember. The next time I awoke was in the hospital room and my family was standing around. I went back to sleep. The oral surgeon and two interns came in to talk with me very early the following morning. I was told he did remove a very large synovial cyst that had been growing from the inside of my left jaw joint. It looked as if the cyst had developed within the left joint and grew out until it enveloped the entire joint. The remaining rib bone had to be removed and the remaining bone was burned to try and stop any new cyst from developing and causing more damage. I was told I would have to stay in the hospital for two days and we would try another rib graft reconstruction around the end of November. I was released to go home Friday night and scheduled to return to Shands on the 20th.

I felt as if I was in more pain than before (again) and the left side of my head, lips and fingers were numb. Something inside of me continued to pester me and was telling me to not get to comfortable, this "cyst problem" was not over yet. My teeth began to do the moving thing again and I could not do anything to relieve it because my mouth is wired. This has never been a good sign.

I received a letter from Social Security in Tallahassee and the dumb people put a telephone number on it. So I called it and spoke with the guy who is "reviewing" my claim. He had the nerve to tell me I have the worst case of TMJ he has ever seen. Ok. Then pay my claim. During those two weeks I stressed over having the rib graft reconstruction done in November. I did not feel I was ready mentally, physically or emotionally. The question remained whether any cyst would return and what was the cause of the cyst. When I had the rib graft reconstruction in March three cysts were removed along with the bone they either were in or attached to. There was no answer to my question of where they were coming from and why. Almost three months to the day of the March surgery, we saw the first sign of the cyst the surgeons had just removed. I felt the second rib graft reconstruction had to wait for at least four months to see if another cyst’s would develop.

When I returned on the 20th of October, I voiced my feeling and fears to the oral surgeon. He stated he had spoke with the other surgeons and they felt in September of 2001 would be the best time for the next rib graft reconstruction. This gave us plenty of time to watch for cyst’s and my body could heal so I would be better prepared for the surgery. As I sat waiting in the room for a x-ray to be taken, an intern came in and cut my I.V. loops so they could measure my opening. I was taken to x-ray and then placed back in the room to await the oral surgeon. When he came in the room, he first looked at the x-ray that had just been taken then asked me to open as far as I could without pain. When he saw the wires cut on both sides, he asked me who did it? I told him one of the interns.

So I had to be prepared for the old wires to be taken out and new ones placed in. After an hour I was rewired with the opening of the width of a grain of rice. During this time I had also requested the oral surgeon write a letter on my behalf to the Social Security Disability office describing my condition and when he planned to perform surgery on me again. He did as I asked and faxed the letter to the person requesting it. I really cannot believe, Social Security took money out of every paycheck I made. I did not give it to them. They took it. And now I have to file two tons of paperwork and fight to get my money back? Oh wait a minute, this is our Government, there are no answers to the insane way they operate and use our money.

I have had more soreness in area's I have not experienced soreness before and I really think after every surgery my pain level is greater than before. Also the more I stress, the higher my pain level goes and the harder it is for me to try and get some type of control over the pain with the pain pills. Thanks Social Security. Pay my claim so my stress level will go down. How am I able to live each day in this level of pain? How can I stay alive? How can my body continue to keep pumping blood and my organs continue to work with this much pain shooting through my body?

I lay in this bed and pray that my body cannot handle all this pain at once and then my heart will just have to stop beating. Then the pain will stop for me. Now it has been almost a month since they removed the cyst and I feel as if I am on the biggest roller coaster I have ever been on. This one just happens to be my life. These patches and me are not getting along. They keep coming off so I feel as if I am always going through withdrawals. Day and night. I am so tired I don't even want to get out of bed. This morning when B. Woke up he woke me up and asked me where my patch was (I am sure he checked to make sure I was breathing first. Him and G. Have this thing about getting right in my face to see if I am breathing, then they end up getting to close and I want up scared to death) and I told him on my arm. NOPE. Guess again. So we could not find it, tore the bed apart looking for it. He turned around to leave the bedroom an get me another one from the bathroom so I would not start withdrawing and guess where it was? Stuck to his back. Well, the damn things will not stick to me but they will stick to him.

So he had to call in to work and take the day off. The doctor said to watch him all day and if he begins to act funny or feel anything strange to call 911. My headaches are coming more and more and seem to be getting stronger. I feel as if I want to vomit. It feels as if the pain is splitting my head wide open. Sleep is my only escape from all the pain and during the day I cannot take the sleeping pills for fear I will not wake up. When I am awake, I just sit. I am too scared to take a shower or go out into the back yard or the garage. What if I fell or passed out? G. would be the first one home and she would be the one to find me. What if I did taking the sleeping pills and not wake up? Again G. would be the first one home and she would be the one to find me. I could not do that to her.

Upon our return from Shands, I awoke on the 22nd freezing to death yet pouring sweat. I could NOT get comfortable. My pain level is through the roof and I cannot get it under control, the entire left side of my face is so sore if I touch it I will scream out in pain. My mouth is wired, I am in pain and I feel like I have one hand holding onto the very end of the rope with is cutting into my hand and I have no choice left but to let go of the rope. My patches are not sticking again and I am going through withdrawals from them. I have NEVER been in this kind or level of pain. It only gets worse. I am stupid enough to think the pain cannot get any worse and yet it does. Why me? What did I do to have to suffer like this and in this pain? I feel like I am causing myself more pain and discomfort. I cannot allow my top teeth to rest on my bottom teeth due to the pain in my right joint area, So now the muscles in my face feel like they are ripping and causing me even more pain in my face, neck and shoulders. I feel like my entire body is working against me!

November, 2000, I am STILL in extreme pain, I have no choice but to sleep on my back since I cannot lay any other way. I am losing the feeling in my left arm and hand. It comes and goes and at times I wake up without feeling in my arm or leg. I still have three stitches in my head and one in my ear that have not fallen out. I did try to pop the one in my ear out myself and the pain brought me to my knees. So I have decided NOT to touch any of them again! If they are still there when I go back to Shands in December, then I will ask Dr. D. to numb me up and take them out. Once my hair grows back out and if they are still there then they will not be visible. It just looks like I have a white string hanging from my ear. My head is killing me, but that could be from getting busted in the head with the vacuum cleaner this morning. I am just having a bad day all the way around. My head does not hurt where the vacuum hit me, but I did think I was going to pass out from the pain. I think I am most fearful of passing out and hitting my jaws. Just like all of this today, I am here by myself and I want to take something for the pain, but Gena gets home before Bobby and what if I take too much and die and then Gena would be the one to come home and find me. I feel trapped! I am so tired of being in pain. I now know I am getting sick. I woke up this morning (9th) with a dry cough which it is VERY hard to cough when your mouth is wired shut! I am having to tape my patches on since they will not stay on by themselves. My pain is out of control! I ended up in the ER, I now have a kidney infection, a cough and my mouth is still wired shut. My pain is out of control and I just want to die.

The Dr., in the ER said I was dehydrated and I needed to drink more liquids. YEAH right. I end up with more on the front of my shirt than in my mouth and it takes facial muscles to drink and mine hurt with every movement I make so why would I cause myself MORE pain? My entire body is cramping and I feel like crap. I am so uncomfortable I cannot even sleep which only makes my pain worse. YES it can and does get worse. Why haven't I died? How can my body, my heart continue with this level of pain? Why doesn't my heart just stop beating from the shock of the pain?

Well I have had enough. One of my wires broke and cut up the inside of my cheek so I cut all the wires myself then pulled the wires I could reach in between my teeth out myself. There is still some wires in my mouth. This is something I will NEVER do again. My knees are going to be black and blue from my legs going weak and banging my knees on the bathroom cabinet door. The numbness in my face is spreading. I now have no feeling from my left temple to my jaw line. My body is still cramping and now I have blood pouring out of my mouth. They are making me go see a shrink next week. What am I suppose to tell that person. I am in pain and the pain is in my head which makes my life a living hell. Is there some scripted way that I am to feel? I am in very deep and strong pain that NEVER goes away. I hurt. The doctors do not know what to do for me right now. I have a "disorder" that will never go away and that there is NO cure for. Hummmm so just how as I suppose to feel. Maybe this shrink can tell me. The pressure has returned to my left jaw joint area. Well if I had a jaw joint that is where it would be. There is also a "lump" there and when I push on it is it squishy. My educated guess is another cyst. My pain is now throbbing is two separate area's of my face. I cannot concentrate when this happens. I feel as if the pain is taking control over my entire body.

December, 2000, I still have not been able to cut the IV loops of my bottom teeth. I have been talking to my local congressman and he took over my SSD claim. His office called me this morning to see if I had been called to come sign the SSD papers and pick up my check. NOPE. Not a word. She said she would call me back. Yeah, heard that one before. This "fear" inside me grows every day. Every day I wake up and wonder WHY I had to even wake up then realize I will have to live with my TMJ every day for the rest of my life. There is no cure. It is so depressing. Why couldn't I have just broken my arm or leg? Then I could have gone to a DX had them reset it, cast it and in a few months I would be like new again. The pain would have gone away. It sucks knowing the pain is not going to go away. You have a headache, you take a couple of pills, lay down and shortly the pain is gone and you are like new again. TMJ pain does not go away. I do not get a break from the pain. I am feeling fear regarding this next surgery. It seems every time I have a surgery my pain grows stronger and my TMJ becomes worse. I fear my jaws will never be "fixed." I fear the pain will never go away. I cannot even remember what it was like to wake up and not be in pain. Fear is just the lack of understanding. But what part of this am I not understanding? That my life has been totally turned upside down and ruined by TMJ? No, I understand that 100%.

I saw the shrink. She asked me if I would commit myself or did I feel like I needed a Judge to commit me? I told her I needed someone to help me control my pain. The only thing that needed sorting out in my head was the pain. My life resolves around the pain. I want to scream, I want to cry, I want to yell, but all that will do is make my pain worse. Will I be like this for the rest of my life? Again, WHY me? What did I do? I just want to give up. I hate my life. I hate what I am putting Bobby and Gena through. They HAVE to live with this every day of their lives also. I hate living like this. I have no energy, the pain just drains me. Just taking a breath uses up too much of my energy. If I had a gun and the energy, I would shoot myself.

The congressman called again and said my SSD claim had been approved and wanted to know if I had received my money. Nope! I was told to sit by the telephone and wait for a call back. I have nothing but time. My pain is just un-describable. I really feel that if I were to take a hammer and smash the left side of my face I would actually feel better. It has been almost a month since I was in the ER and my body is still cramping. Why can't I just deal with ONE problem per day? I saw Dr. D. they cut my IV loops off. Nothing new. Pain, Pain, Pain. My jaws are killing me. Between the pain and my facial muscles feeling like they are being pulled and getting ready to snap. 2001, I get to look forward to another year of pain. Lucky me. Now I am having a swelling problem. My scalp and the left side of my face swelled, I look like I have been beat up on the left side only. I have lost the hearing in my left ear. I hope it is only from the swelling. It just amazes me that my pain and swelling can get worse. Now on my left side I can feel a bone sticking out. I hope it does not bust through my skin.

What is it from? Where did it come from? WHY???? I want to be able to have my husband kiss me and not feel pain. I want to be able to hug my child and not feel pain. I can't even kiss my husband! I saw Dr. D. I lost another 7% of bone. Just what I needed. They cannot wire me back down. My jaw bone is too weak and they do not want to risk it. I do have another cyst so we will have to see how this one pans out. We discussed exploratory surgery in August. We will just have to wait and see. We drove on down to Tampa and spent the weekend. We needed the break. I slept. When we got home, SS office had called our home 27 times. My SSD claim has been approved and they need me to come down to the office so I can get paid. One battle won.

My right jaw is beginning to cause me more pain than it has in the past. I am worried about it. I know there is more strain on the right side because of all my problems on the left. Still, no exact date for surgery. Just pain and extreme discomfort. Some part of my left jaw has begun to side in an out. Not really pop out just slips out of place and sticks out of the side of my face. Not good. I have been instructed not to touch it or push on it. I have not energy, my pain controls every aspect of my life. I wake up every morning depressed because I am alive. I have never felt as alone as I do right now. I feel like my TMJ and all the problems it causes are all for me to deal with. I feel isolated right now. I know I am not the only one in the world with a f@#ked up jaws - but I do not know how to explain how I feel. Just alone. No one fully NO doctors, NO family, NO friends.

I am now sleeping with an ice pack on one side of my head and the heating pad on the other. I am surprised Bobby even sleeps in the bed with me. He has voiced more than once that he is fearful of sleeping in the same bed with me for fear he might roll over on me or as he has done in the past, put his arm under me and drag me across the bed so he can pull me up to him and in the process my face gets hurt. The left side of my jaw is so tight. It feels knotted up. I want to punch myself in the face to see if I can get any relief. Gena is gone for a week. So I am sleeping and popping pain pills. I have slept a little better since she has been gone. One of my biggest worries is that she will find me dead and since she is gone for a week I do not have to worry about that now do I. I have put a calendar in every room and have three pocket ones laying around. Since I sleep so much I lose track to the day, month and even the time. Sun rise and sun set mess me up if I have been sleeping.

We went to my sister's house for the 4th of July, family cook out. Gena came home. I stayed down there for a while then I got tired and had to come home and lay down. Gena went with my sisters and their children to watch the fireworks. I had laid down and fallen asleep on the couch when the telephone ringing at 11:30 p.m. woke us up. Gena got a fishing hook stuck in the back of her thigh and my sisters were freaking out. They tried to get it out then took her to Mom's and she tried to get it out so then they brought her home and we had a family trip to the ER. The ER doctor let her keep the hook. So when we got home from the ER I could not sleep so I watched a little TV then since I had not slept my pain level increased.

When does it stop!!!! Something is going on with my facial muscles. I had some kind of "attack" I felt like I really needed to yawn (which I cannot due anyway) but it felt like my face was frozen so then I could not breathe. So now the muscles on the left side of my face all the way down my neck and into my shoulders are in a knot. I look like I am taking steroid injections the way the muscles are bulging. It looks gross. I was outside on the front porch and thought I had been stung by a bee and within about thirty minutes by face started throbbing and my left jaw shifted so now it feels like the bottom of my jaw is jammed up into the corner of my left eye. Then I felt the "sting" again and again. In all eight times in about four hours. Pain, Pain, Pain. It seems none of my medications are working. I cannot sleep. I am in pain and very uncomfortable. Even my teeth are hurting. It feels like they are moving/shifting and like they are going to over lap each other. I have taken tooth picks and stuck them in between my teeth. It has given me a little relief but I am still in pain. I am NOT sleeping straight through the night. I woke up and got up out of bed nine times last night. Could be why I am so tired all day. My entire face hurts. PAIN, PAIN, PAIN.

I woke up and could not move my jaws. I could not drink anything or swallow. The pain is un-describable. Something is wrong. Yep. About three hours after I woke up, I felt a migraine coming on. Within minutes of the first pain ripping through my head, my knees buckled and I was on the floor on my knees vomiting. Which only made my face hurt even more. G. helped me to the bed and I passed out. Bobby came home to check on me and I tried to tell him what was going on but I just could not get any words out. Just breathing was killing me. I guess I passed back out and the next time I woke up I thought blood was pouring out of my eyes, nose, mouth and ears, but it was only pouring out of my nose. I went back to sleep until morning.

When I got up this morning, as soon as I sat up in the bed, blood poured out of my nose. I was so weak. I told myself if it did not stop in 10 minutes I would call 911. I laid back down to try and stop the blood and fell back asleep. I woke up to Gena freaking out. My face, hair and pillow were covered in blood. I do not know how long I bleed but I am so weak. I think the ice packs are causing me more pain. IT hurts. I do not want anything to touch my face much less an ice pack. I am losing this battle. The TMJ is going too win. I went outside today and tried to re pot some plants before they die. Now I am in so much pain. I should have just left things alone. PAIN, PAIN, PAIN. Bobby and I are fighting. September 11, 2001 Bobby called me and woke me up this morning and told me to turn on the television, any channel...I am in shock and disbelief. I have tried to call Elisa and all I get is a recording saying the area I am calling has been hit by a tornado. I hope she is okay.

September 22, 2001, I was checking the voice mail messages tonight and Elisa was on there. My knees buckled and I burst into tears. She is alive in all the horror on NY right now. I have been trying to call her back but the lines are either busy or I get a recording saying a tornado has hit the area I am calling. The crying is causing me more and more facial pain but my heart is so relied that she is alive. I have been so worried about her. For the first time in a long time I feel Joy. M Friend is ALIVE when so many more are dead. Horrid, Horrible people. My Friend is alive and safe. I can sleep in peace tonight and know that she is safe. We fight way too much. He makes me feel like this is my fault. I did not cause the car accident, I trusted Dr. M. by allowing him to perform surgery on me and I believed him when he told me I did not have TMJ and all the pain I was feeling was in my head. I am so sorry I put my trust in a doctor. An Oral Surgeon who specializes in TMJ. Why doesn't he just leave me and Gena? Why does he stay? To torture me and cause me more pain? I am sorry we do not go and do anything together anymore.

I have NO CONTROL over my pain. I am sorry he cannot hug me or kiss me without causing me pain. NO I do not want him to touch me because it causes me PAIN!!! I am sorry. Just leave. Or maybe I will die and then he will be set free. Free from guilt. I believe the only reason he stays is out of guilt or what other people will think or say about him. That he left his wife because he could not stand her illness. There are times I really do believe he is cheating. Why shouldn't he? What kind of a wife am I? I sleep and when I am awake I am a bitch because I am so uncomfortable and in pain. No we do not go fishing anymore, nor do we go to the beach or out to dinner or to a movie. I never know how I might feel and should I feel okay, that can change very rapidly. He should leave and find someone else.

October, 2001, my "lump" continues to grow. I am to have a CT scan to get ready for surgery. I am experiencing a tearing/burning sensation within my face. WHY? My entire body aches. If I hear the words "chronic Pain" one more time I will scream!!! The CT Scan showed three cysts that are visible. And maybe a bone infection on my left side and the screws that are left in tact have begun to tilt from the pressure of not enough bone. Had to see an intern. What a joke. I am now being told the reason I am feeling so much pain in other areas of my body is that my facial nerves are on over load and transferring the pain to other parts of my body. Just what in the hell does my facial pain have to do with the pain in my hips, knees and lower back? Why am I even feeling pain any where else in my body with all the pain medication I take? I dropped the hose head on my big toe, busted it open, blood pouring down the drive way and I NEVER EVEN felt it! But I feel pain in my hips, knees and lower back. I take enough pain medication to KILL a horse!

Christmas is almost here. I want new Jaw Joints and I want to be able to brush my teeth! Oh how I miss brushing my teeth! Something weird is going on. It feels like ants are all over my feet biting me, to the point that me feet turn red and swell up, but there are no ants. I will just blame it on that whole deferred pain crap the intern tried to feed me. I found another "lump" in front of my left ear this morning. Just what I needed. Another cyst. I get a new cyst for Christmas. Lucky me. Maybe this one will kill me. My captain crunch noise is getting louder within my head. My left joint (what is left of it) feels like it is getting caught on something. I cannot describe it. Dr. G. put me on Paxil. I am not happy but I do not feel the desire to kill anyone right now. I just want to sleep. I cannot even keep my eyes open. If I were to stop moving and shut my eyes I would fall asleep standing up. They found two more cysts within my right joint. So for now I have four on the left side and two on the right side. The ones on the left continue to grow. Bobby is being hateful again. Why? Why does he stay? I wish he would leave.

January 2002, I am beginning to HATE going to the Doctor's Office. I feel like every time I go they find something wrong with me. Something snapped, popped, cracked, broke whatever on my left side. I felt it, I almost passed out from the pain. I put my hand on the left side of my face where it happened and applied pressure to the area and whatever it was went back where it came from and I almost vomited from the pain. My left eyebrow keeps moving by its self. Muscle spasms. Not kohl and now I am sick, I have bronchitis and walking pneumonia so I feel WONDERFUL! There is some kind of white slimily crap coming out of my eyes. My face, neck, back, chest, left arm and my arm pit are sore and hurt, per Dr. J. it is from me straining to breathe. Yeah right. Maybe I will die. Could I be lucky just for once? Something is just not right with my left jaw joint. Well, what is left of it. It really feels like it is coming out of place. I cannot sleep due to the pain. How can it be so strong while I am taking pain medication? What if I did not have any? I cannot even imagine what level my pain would be without the drugs! I am so depressed. It is pain like this that scares me. I am scared of being like this for the rest of my life. I am scared of being in pain like this for the rest of my life. I think I am having panic attacks and I am bringing them on myself. I am having pain in my chest, around my heart and in my left shoulder blade. Dr. G. hooked me up to the machine and everything was okay. When the pain eases off then I am sore every where it was. To weird.

I am back on the patch again. My pain has been staying level. No sharp spikes in pain. But then again all I have been doing is sleeping. I freaked out this morning, when I woke up and checked my patch almost all the medication was drained from it and I only had this one on for about 32 hours? So I went ahead and put a new one on. Today is not turning out to be a good day. I feel so blah. Then Bobby came home and asked what was going on, I had only moved from the spot I was in when he left this morning twice and that was to go to the bathroom which is maybe 10 steps...so I told him I was having a bad and day and he snapped and went crazy on me yelling at me and telling me every day is a bad day for me. Yeah...lots of support from him. I woke very swollen and I mean disfigured swollen. Most likely from all the crying. I am so swollen that when I try and close my mouth pain shoots through my face. So now I am sitting here with my mouth hanging open. Glad I do not have any DX appointments today. I tried rolling my neck around to see if I could get any relief and something popped in my jaw and then I felt more pain. I just thought I was feeling pain before. I tried to put my jaw bra on and put the ice packs inside of it, but the pressure of the jaw bra forcing my mouth closed hurts even worse than my just letting my mouth hang open. It feels like my face is being ripped off my skull. I have NO creases or wrinkles at all any where on my face right now. I look like a face lift gone bad. UGH!!! I am so frustrated! When I go crazy and have to be locked up it will be from the pain and my TMJ.

I have been having dreams about this implant surgery and in my dreams I am being told to NOT but all my hope into it because it is not going to work 100%, there will be failure but I do not know what kind of "failure," why cannot they make the dreams more clear when they send them? I got out of bed and made it half way down the hallway and turned around and went right back to bed. I don't even have the energy to make it to the couch. Sad. I am pathetic. I will just stay in the bed all day and focus on breathing. I was awoken this morning by my body. I was shaking to death yet my pj's were drenched in sweat. I am withdrawing, but from which drug? My fingers and toes are blue. I took a hot bath to try and warm up the parts of my body that are frozen. I can smell the odor of medicine so it has to be the patches. I cleaned both my arms very good and put a new patch on. I am going to curl up on the couch and sleep for a while. The whole bath thing just wore me out. The telephone ringing woke me up and if I did not answer it Bobby freaks out and thinks I am dead. It never crosses his mind that I am just asleep. So I answered it and when I went to say hello, my right bottom jaw joint just popped out of place for a second or two then very roughly slid back. I think I went into shock. The pain brought me to my knees. I crawled back to the couch and have not been able to move for about an hour. This has never happened on my right side before. Not a good sign.

I am STILL waking up early morning every morning withdrawing. This morning I awoke at 3:00 a.m. and my head was soaking wet as if I had just gotten out of the shower. My pillow and the bed sheets as soaked. My patch has slid off since I was sweating so much so I had to clean my arm real good to get another one on. I know it is the patch because I can smell the medicine. Maybe I just cannot wear these. I am so tired. I have no energy and just the thought of having to shower and get dressed to go to the DX office to find out what the deal is with these patches wears me out. Both of my jaws are very sore. The pain is still there, of course, my face is very sore to the touch so I am not able to wear my jaw bra today. I am not even going to attempt to put it on. Why cause myself more pain. It's not like I don't have enough already. I refuse to end this entry with the WHY'S? Because when I open my journal for the next entry they are still there unanswered!

February, 2002; I now have the withdrawal issue under control. I started writing the temp down when I write my entries and when we drop below 50 then I am withdrawing. WHY? No one seems to be able to answer that question not even the pharmaceutical company who makes the patch. Now that is a very comforting feeling. I also found out today from them that I am NOT suppose to be taping them to my arm. They claim that if the patches are not sticking on their own than I "must have a bad batch" and need to return them to my pharmacy for a new batch. Yeah...blow some more smoke up my butt. I am not sleeping through the night. My pain is out of control and I seem not to be able to get it under control with all the drugs I have. My face, hips, legs, lower back, it just shoots through my body and the pain in my right hip throbs in sync with my facial pain. To weird even for me. I took the Xanex and Valium along with my pain pills and I just am not getting any relief. I am up and down all night for the past 7 or 8 nights. I saw Dr. J. she changed my medications around a little to see if that will give me some relief. I have to go have a CT SCAN. I got a telephone call from an intern, wanted to discuss the Christiansan Implant. Told him there is NOTHING to discuss I refuse to have that faulty product put into my body and that for the time being I would just suffer through the pain before I would put that in my body. He said Dr. D. would be calling me. I slept most of the day since were supposed to go out to dinner tonight for my Birthday. We had discussed it during the week and decided to go on my Birthday and not wait until the weekend since E. will be here. Yeah… well he did not take me so instead I spent my Birthday in my bed crying myself to sleep.

We hardly ever go out since I never know how I am going to feel and there is not very much I can eat out and I am very self conscious when we do eat out. So I expected that he would at least take me out for my Birthday. We just had a fight a few weeks ago about me never feeling well and we do not do anything together anymore, we do not go places together unless he is taking me to the DX office. THANKS for ruining my Birthday. I get to spend it with my TMJ! Smooth move! I cannot stay awake for more than two hours at a time. And I mean two hours. My eye lids close on their own and I am out. My neck is very stiff. I do not have the energy to drive to Dr. B's and I am scared I might fall asleep at the wheel if I did drive myself. I tried doing the "neck rolls" but that just causes sharp shooting pains into my face so I have nixed that bad idea.

I am still going through withdrawals. Almost three weeks now. So the Dr. G. put me on a combo to counteract the patch. I think it is working. I now KNOW why people who are hooked on drugs cannot get off them. I would have NEVER put myself and my body through that. I thought I was going to die from the withdrawals. HORRID!! I could not walk because I was so cold but yet my clothes were drenched in sweat, I was shaking so hard my head hurt and my teeth kept slamming together which did not help my jaws at all. I was so sick to my stomach, I had to fight to keep the pain pills and the combo medication down so I could not waste any energy on eating as if I wanted anything to eat. UGH! Everything turned my stomach. I just lay on the floor in a fetal position and focused on my breathing. The medication was oozing out of my pores. When I would try and wipe the sweat/whatever it was oozing out it, it smeared and was slimy. GROSS.

EVERY area of my body hurt. I could not even touch my skin without feeling pain. If I had known that I would have to go through this, I would have found a way to keep the patches on even if I had to eat them or suck the medication out of them. NEVER EVER again. If there is a next time, they will put me in the hospital and put me to sleep and do the reversal. Now that episode is over I am ONLY taking pills NO more patches! My face is so sore from me clenching my teeth during the withdrawals. My body feels like I have been run over by a semi truck. I now have the flu, per Dr. G. because my body was weakened by the withdrawals. I had my CT SCAN and of course it is bad. It looks like I have a bone infection around the screws that are left in the left side of my jaw. So if it is that then the screws have to come out and the infection has to be treated or the bone (what little I have left) will have to come out.

Today is a NO TOUCH day. I cannot brush my hair, wash my face or even move my mouth. My jaws are so swollen that my left ear is closed again so I cannot hear anything out of it. I tried sticking my pinky finger in it but when I do I feel my jaw bone poking through into my ear canal and it just makes me sick to my stomach. Plus I am afraid if I keep touching it the bone might break through the skin and then I will be in a world of crap.

March, 2002; I am still swelling just way too much for comfort. Dr. J. gave me more sleeping pills so I can try and sleep through the night. They are thinking since I am not resting fully during the night that is why I am sleeping so much during the day and since I am not "resting" my face is swelling. My right jaw is now popping loud enough for anyone sitting within arms reach to hear it. For some reason no one can hear my captain crunch noise but me, but they can hear my jaw with it pops. Gena was on the love seat and I was on the couch and my right jaw popped and she jumped, turned her head and looked at me and said that did not come from you did it....she was freaking out that she heard it that far. Then of course as any pre-teen would react, I grossed her out. Thanks Gena. My face just does not feel right. I look at myself in the mirror and for how I feel and then look at myself, I do not know how to explain it, when I look in the mirror, I expect to see my face distorted because of the way it feels. Like when you talk to someone on the telephone that you have never met, so you get a mental impression of how you think they will look from their voice but then when you see them it is not what you expected. I do not feel like my ears are on my head right.

I have to go have my blood drawn and chest x-ray to get ready for surgery. I also now have some kind of skin fungus. It is making white spots on my arms, back and upper chest. What is up with this? All of these "Bad Days" when do I get to have a "Good Day"? Just one a month would be nice. I would take a "Good Day" with facial pain right now. Gena's cheerleading coach was stabbed to death by her husband tonight. It was on the 10:00 p.m. news. I am in shock and now I have to try and explain to my child what happened before someone else does. Even with all my pain I try to remind myself daily that there is ALWAYS someone in the world who is worse off than me. I really want to believe that I have it easy compared to someone in the world.

Pain, Pain, Pain. All these drugs at there today and no one can make a pill to stop ALL pain? I forced myself to get up this morning and so some light cleaning and now my face is retaliating by swelling and causing me to have shooting pains through my face. OKAY, I get the point, just ease off the pain! Our relationship is falling apart. We are like roommates. I asked if we could try and plan something one night this weekend and he jumped down my throat and told yeah as long as it was free. Then tells me he is going hunting this weekend. Well, that is not free and if would rather spend time in the woods than doing something with me, fine. But he better NEVER throw in my face the fact that we do not do anything together EVER again.

I had my appointment to get ready for surgery and the outcome is not good. I have seven (yes, they were counted!) fractures in my left cheek bone, my left eye socket has splinter fractures (they could not count them) and I am being told that an implant HAS to go in before my face collapse. And of course the only implant on the market is NOT one that I want in my body. My only other option would be to wait until it does collapse and then go on a feeding tube. I am also a HIGH risk for rejection and I just do not feel this is the right path for me. I was told that if I did go through with this surgery, when the new implants were approved and ready these would be taken out and replaced with the new ones. I just do not want to do this. TOO many women are dying from the Viteka and the Christianson is just as bad. They were nothing but money makers. And I do not want either in my body. I would rather be on a feeding tube.

Okay, I won. No implants at this time. "We" are going to ride it out and just play it by ear. Or should I say by pain. If there was a 110% guarantee that the implants would take away ALL my pain and allow me to return to a "normal" life I would jump on it in a heartbeat. But that is not the case and I am just not willing to put them things in my body. My body rejected my OWN bone. So if it does not want my own bone then I know it does not want the implants right now.

April 2002; I just cannot take any more and I do not know what is going on with him. I packed mine and Gena's stuff up and moved out. He is not supporting me in any way shape or form. Every day is a battle and it is a battle I cannot fight right now. I am in pain. I say things I really do not mean at that minute but he pushes me until I just cannot take anymore. I am being accused of cheating. Yeah...with who? An oral surgeon who can cure my TMJ? Because right now that is the ONLY person I would be all over and that does not exist. I just cannot take anymore from him. I might leave the house once a week if that. 99.9% of the time I am asleep. He just shows up at the house like he is going to catch me doing something...yeah...I am sleeping. Big whoop! Because of him and his accusations and starting a fight with me as soon as he walks in the door, I end up crying all night, I am so upset, then the next day my pain and swelling are HELL. I am so miserable. If I did not have Gena, I would take my own life to escape the pain.

He only thinks he knows what kind of pain I am living in. He better pray to whoever he believes in that he NEVER has to walk in my shoes. He tells me I am lucky to get to "sit at home all day" as if I enjoy being forced into this position because an Oral Surgeon made a bad call and did not give me the proper treatment. Yeah, I busted my butt for two years + to get a college degree so I could sit at home in pain. Yeah.. that was a plan all along.. he figured it out! I am just miserable. My jaw pain is off the chart. It is so bad that it wakes me up even if I take the sleeping pill which now I have to take two of, I can get about three hours of sleep before the pain wakes me up. I am in so much pain that I fear even if I died, the pain would follow me. There is NO escape from this pain.

May 2002; We are trying to work things out. I do not know if it is going to happen. My pain seems to be getting worse. Last night I had the sensation again that my teeth were moving. So I got up and got the tooth picks and stuck them in between my teeth. It does take the pressure off but it does not relieve the pain. My gums swelled up also, that was not a normal occurrence. My migraines are coming with more frequency. I am having less and less waning. I still feel as if I am not getting enough sleep at night so I have to lay down during the day and take a nap. I have been getting very sick to my stomach after I take my pain pill and I feel at times the pain pill just does not even touch my pain. I second guess myself and think maybe I did not take it, so I have to go count all the pills in the bottle. This is becoming a habit I do not wish to continue. I gave up on the pain pills and put a patch on today. I just cannot deal with the pain. It makes me crazy.

I am already crazy from the pain I do not need him making me feel worse. He acts like I did this (TMJ) to myself! I would give anything to make it go away. I feel so tired all the time. Mt labs came back and my kidney function is not looking good. This morning I could not open my mouth without all the bone on the left side of my face, even the left side of my nose hurt so bad it took my breath away. It finally eased off after I took another pain pill. Something is going on with the muscles in my face. It feels like they are quivering and I get not get them to stop. I took a muscle relaxer but they are not relaxing. June 2002; We just are not going to be able to repair our relationship. I really do not know what he is doing or what is going on. I cannot do ANYTHING to make him happy and everything I do is wrong. I just cannot and do not need this kind of bullshit stress. My body and mind cannot take anymore. I have enough to deal with just trying to deal with my TMJ. He is not going to support mentally and emotionally than there is no way we can repair our relationship. My facial pain just gets worse and worse. Dr. G. wants to increase my pain medication dosage but I have asked that we hold off on that right now. I feel like I am putting too much into my body as it is and not getting what I should be from the pain medication in return. I do not want to put more in my body. I am so uncomfortable and confused. If I had broken a leg or an arm, I would be "cured" by now. WHY? WHY ME? Daddy and I are going to South Caroline for a week or so. I need to get away.

July 2002; my opening is getting smaller and smaller. I am wondering if my muscle flap has torn? I am having more and more spasms than before and of course my pain has not eased off not has my TMJ gotten "better." The migraines are so frequent now I cannot remember a day when I have not had one. They are so bad. In the past when I have one I am sensitive to light, but now the light, sound, movement anything and I get violently ill and they are lasting for hours. And when they do pass, my head is so sore, even my scalp. My teeth are hurting and I have no desire to even try to eat or drink anything. I do not want to cause myself any more pain than I am already in. My jaws are so tight. I have no side to side movement at all. I know a lot of this excess pain is because of relationship is just falling apart and there is no way to put it back together again. I am tired of crying. I am tired of feeling and being hurt. He is just so hateful to me.

August 2002: Nothing new but pain and when you think it cannot get any worse....a tropical storm decides to spin out in the Gulf of Mexico, (thanks Bertha) make the pressure drop and make land fall just to test my pain level. I really thought I was going to have to go to the hospital. My face tightened up, from all the swelling and I could not get my mouth open at all. So I just sat on the couch and cried the entire time it was making land fall and while we waited for it to move out and the pressure to return to normal. At some point during this storm I don't know if I was trying to force my mouth open or just work it, and the left side slid and when it went back where it came from there was crunching noise. So I feel most assured that was not good.

I keep getting sinus infections with a cold, or the one I had just never goes away. The pressure does not help with my jaw pain any. Now I have something new to write about. I just fall asleep. Does not matter where or when. My eyes close and I go to sleep, I do not even know that I have fallen asleep. This has been going on for a few days and I just thought maybe because of the sinus infection/cold I was sleepy. I don't think so. I was sitting on the couch flipping through the channels and all of a sudden there was this loud boom and I jerked awake. I had fallen asleep while flipping the channels and dropped the remote on the floor and that was what woke me up. I have now fallen asleep in the car. I am so glad I never made it out of the yard! I remember getting in the car and thinking about where I was going, then the next thing I know my horn goes off and I had fallen asleep again. I turned the car off and took myself right back in the house! The one thing that just continues to amaze me is the amount of stress my body can take. And how my pain can get worse....I can be on my knees vomiting from the intense pain and the pain will get worse. How can my heart continue to beat? Why does the intense pain not make it just freeze up and cease to beat? The pain and hell continue as I awake every day, take a breath and realize I am still alive to try and get through another day of pain.

Another Christmas and all I want is two new jaw joints that WORK!!! I want to be pain free...I want A LIFE again. I am so tired all the time. I sleep and sleep and want to sleep more. I am trying to escape from this life I have been forced to live because of him. Because he could not be man enough to tell me that I did have TMJ and he wanted to play GOD and practice surgery on me. I really do not know just how much more of this life I can take. I know I am depressed some morning I cry when I wake up because I am still alive and I KNOW what I will have to deal with through the day. PAIN!!!!!

We are going to Shands soon. New Years eve, we went to my sister and brother-in-laws house and we were there about 10 minutes when everyone started freaking out about my face, so I went to the bathroom to look in the mirror and from the time we left the house until we arrived at their house, umm what five minutes.....the entire left side of my face is grossly swollen and misshapen. What the hell is going on now?????

I returned to Shands on April 4, 2003 and the oral surgeon and I spoke about the new implant that has been "postponed" for almost a year and a half now. First it was to be ready for implantation in January 2002, then I was told sometime in June 2002, then January 2003 then June 2003. When I went to Shands on the 4th of April I was informed there is no longer a release date and they do not know if or when the implant will be released and we had already discussed the risk I was playing with by not having anything done to the left side of my jaw. My right side has only continued to deteriorate which was expected. The doctors were fearful the left side was going to give way and cave in which would leave me in more pain (as if that was possible! and yes it is) and me going on a feeding tube which has always been my cut off point. No feeding tube. Put pig parts in me, cadaver parts anything, but I refuse a feeding tube.

We had talked about the TMJ Concepts Implant but I was still not real happy about putting something like that in my body and really felt more comfortable mentally with the Shands implant. So we discussed it and The TMJ concept is my last option for now. What is it with me and getting to the last option? The oral surgeon gave me an information guide to the TMJ Concepts and I read over it (probably a hundred times now) and then we discussed the possible side effects of the implants and the fact that I would have to undergo a surgery to "clean out" all of my hardware. I came home discussed it every night with my family and my TMJ family. I called Shands back three days later and agreed to the surgery.

Shands called me on May 13, 2003, to tell me my "clean out" surgery would be on May 21, 2003 the day before my daughters 14th birthday. Oh what a birthday present! Bobby and I left Cantonment around 8:00 p.m, on Tuesday, May 20th and headed to Gainesville. We arrived at the University Center Hotel at about 2:30 a.m. Once in the room I could not sleep and laid in bed and watched T.V. until time to get ready. We went over to the hospital at check in time only to be told the first surgery had arrived late and had just been taken into OR. I was tired and very irritable. They allowed us to return to the hotel room with the exception we answer the telephone when they called. Duh! Not A problem! I again laid down and of course fell asleep for about thirty minutes then the telephone rang for us to come back across the street. When we arrived in the hospital they were waiting for us and took us straight upstairs to the OR.

Within thirty five minutes of getting on that elevator, I was laying on the table in the OR going to sleep. I awoke to a doctor asking me to open and close my eyes and lift my eyebrows. Everything still worked. Thank you Great Spirit! I was informed all the hardware was removed, there was no cyst and they had to remove my wisdom teeth on the left to make more room for my brand new implants. This came as a shock since the first surgery I had in December of 1998 was to remove my wisdom teeth. I did ask and was told no, they do not grow back and I had three wisdom teeth that had never been removed and as of this time I still had two on my right side. This bit of information brought upon my a flood of emotion, fear, confusion and then anger.

The oral surgeon who had damaged my left jaw had lied not only to me but to my insurance company. Just what had he done to me for two and a half hours while I was asleep in his operating room in his office? I also learned that when asked questions under anesthesia is the same as being drunk, you tell the truth. The surgeon asked me if I had pain medication on me and if so where was it. I told him it was in the inside pocket of my brown travel bag inside my garment bag which was in the trunk of my car. Wow! B. was totally amazed I gave such a detailed description to the doctors under anesthesia, so was I!

About two hours after surgery I was allowed to make the six hour trip back home. After receiving the information that I did regarding the wisdom teeth that had never been removed, it was a long ride home filled with a lot of tears and anger. What kind of human being does something like this to another human being. Is the greed for money so great? Does he think he is God? WHY? WHY? And most importantly WHY me?

I can say that the Oral Surgeon's that I have had the honor to receive treatment by since the first one who damaged me and screwed my life as I knew it FOREVER, have been and continue to be ones who practice in the field because they care and they want to help. I know from the others affected by TMJ that there are doctors out there just for the money and do not care what harm and permanent damage they do, but I feel lucky and blessed that I only had to deal with one. Dr. D has been the one that has brought some light and hope to me.

I am so scared. I am not afraid of dying or even really becoming worse health wise than I am now. I am more afraid of failure. I feel I have hope within my grasp. Just a few months away. All of my fear is of failure. The what ifs? I am so scared the implant will take and I will be pain and pill free then my body rejects the implants and I am right back where I am now. My rib graft reconstruction failed because of my body.

No one, no doctor, no intern was to blame for the failure. My body decided it did not want it or maybe my TMJ's became angry over the repairs and destroyed it. I had almost a whole month of no facial pain and no pills. The feeling of power had begun to return. I was in control of my mind, body and soul. Then my world was blacked out again by pain and failure. The rib graft reconstruction began to fail and slowly the horrible daily living of pain and pills became my world once again. I cried for days, months and at times still cry because of the failure.

I am so scared of being handed that freedom of a real life without physical pain and every hour and minute being ruled by pills. Pills that I must have to keep the pain from making me insane. I want my life back. My life before TMJ took over. Before pain and pills took over. I want the control of my life back. I want me back. I do not want this life controlled by pain and pills. I want to find me again. The strong woman who was not afraid of anything. The woman who made up her mind to do something and found away to do it. The survivor. Now I feel like a victim. I have never been the victim in my life. NEVER! Now I am.

I am the victim of an oral surgeon who refused to listen to what I had to say, refused to listen to what I was feeling inside of me. He refused to believe I knew what pain was. He refused to believe that I knew my own body. He did what he wanted and refused to help me and instead caused me more pain, destroyed my jaws and my life by doing what he wanted to do to me instead of giving me the medical attention my insurance company paid him to give me. I want him to be the victim. I want him to suffer. I want him to feel the pain I have felt since he first preformed surgery on me on December 31, 1998. I want to take life moments that can never be lived again away from his family, away from his spouse, away from his children. There is no monetary amount that can ever make up for my life, for my daughter's childhood, for the time my husband has had taken from him, for all the time my family has had to give up for me and my "TMJ Disorder."

I cannot even describe the sick feeling I get knowing he is still treating, operating and even touching people and without the intention of helping them, only the possibility of him ruining their lives.

May 24, 2003, the swelling is starting to go down a little. The inside of my cheek is raw from my face swelling and then my cheek repeatedly got caught in between my teeth. NICE! My face looks unnatural, gross, disfigured plus I just feel gross.

May 26, 2003, woke up this morning in FULL WITHDRAWALS....no reason why? I am so cold and my teeth are chattering which only makes my face hurt WORSE! Five days after surgery and my pain is worse than before. The bruising is starting to show up.....very nice! I am now experiencing cramps in my legs, hips and back. So along with all of that, I am in PAIN, I cannot get my body temperature to regulate so I am either freezing to death or burning up. I am so uncomfortable I cannot sleep. I cannot lay down or sit. My opening is one finger so I have to be very careful of what I put into my mouth. I really am not hungry so that has not been a problem yet. I have to remind myself if I cram it in I will not be able to attempt to chew it and I will not be able to get it back out. I am NOT going to the ER to have someone remove food from my mouth. The pain is bringing tears to my eyes but I cannot allow myself to cry and cause myself even more pain. I live in a f@$ked up world.

June 2003, today is a scream day. I am screaming on the inside since I cannot do it without causing myself tremendous pain. Every time I try to eat or drink something my face cramps up. So I am going without! I want to break my legs and see if that stops the cramping. I am so uncomfortable. Why do I have to be in so much PAIN???? I am so tired of being in pain! I want it ALL to just go away! My face is killing me. The bone is still sore. My face is STILL swollen and everything on the left side hurts!

The ONLY way fro me to escape the pain is to go into a coma. I am feeling scared but yet a little excited about the implants. I am scared of failure and of putting too much hope into them. I cannot even begin to imagine drinking or even eating something without ANY PAIN! That really is a dream. We take so much for granted. Brushing your teeth, your hair, hugging or kissing someone, drinking, eating. I cannot remember what it felt like to do any of those things before the pain. My migraines are getting worse. They are now engulfing my entire head and the pills no longer work. I tried ice packs but it felt like the pain only got worse. My neck is swollen so I cannot turn my head from side to side. Can I make it until September like this? Why do I have to be in so much pain? I can no longer recall one day, just one day without pain. I want to cry but it hurts too bad to do so. Before they took my hardware out, I did not think my pain could get any worse!

I am so scared. I might get some part of my life back but just what am I willing to do for that? Just how far medically will I go? Am I bargaining my life with this surgery and the implants? Am I willing to take the BIG chance that my life with TMJ could get worse because of the implants and/or surgery? Am I making drastic decisions just to try and be pain and drug free? Right now, and just from the past history of the other implants that were out there...I feel I am making a deal with the devil. I ma going against everything I swore I would never do to my body. But then again I told myself I would kill myself before I ever went on a feeding tube and it has come down to the TMJ Concepts or a feeding tube. I worked so hard to make a life I wanted and enjoyed, it was meaningful and positive to only end up where I am right now? And now I am at the end.

I have to make a decision and I am going to gamble what life I have left because I am in PAIN and have no function. The top risk is my PAIN could be greater than it is now. Am I willing to take this chance? I am more afraid of failure than death. A month after my removal surgery and I am still swollen. Today is a "pity me" day. I am staying in bed all day in my pj's. I want to go to sleep and not wake up until five minutes before my implant surgery.

I am scared. I feel alone. I want to cry, to scream, to yell until the last breath leaves my body and then lay down forever PAIN free. I am not sleeping thanks to my pain. And when I do not sleep my pain level rises beyond drug control. These are the days that death would be a blessing but then the bastard would win. I want to be alive to see him have to admit what he did to me was WRONG! My body is trying to fight something off. I always get sick right before a surgery. Stress. I talked to Dr. M at Shands tonight and he stated everything is on track for the surgery in September. My PAIN is sooo bad. I wish I could just sleep for a little while and then maybe it would not be so bad. I do not dare take a sleeping pill since surgery is not too far off.

My surgery is scheduled fro September 17, 2004. It is on the books, my implants are being made, now all I have to do is convince myself that this will work and it will be okay. That all the HELL I am about to put my mind, body, soul and my family through will be worth it in the end. Six out of seven nights I cannot sleep then it all catches up with me and I cannot stay awake. If the pain would just ease off a little, I could sleep. August, 2003, I am still not sleeping because of my PAIN. Then during the day I am sooo tired but I refuse to let myself take a nap thinking if I am so tired then I will go to sleep at night. NOPE. Does not work like that. My face is still very swollen and some of it could be because I am not sleeping and stressing. Why can't the PAIN just stop for one hour? Can I have ONE just ONE hour to be PAIN free? So now I am sick, partly because I am not getting any sleep. PAIN, PAIN, PAIN. I have no appetite, the pain is making me sick to my stomach. I am in pain so I take pain medication, I do not eat because I am sick to my stomach, then taking the pain medication on an empty stomach makes me even sicker. I will NEVER win this game. Never.

September, 2003, almost time for surgery. I am so nervous. I am really questioning myself as to if I am making the right decisions or if I am just trying to take a quick way out of the pain.

Jackie has had her implant surgery and other than a couple of problems she seems to be doing very well. Well the ride over to Shands was uneventful. I got checked in and we went through all the normal issues. Dr. D., Bobby and me went over ALL the bad things that could happen to me during the surgery and after. I KNOW what I am getting myself into and I am willing to take any risk to be out of pain and discomfort. If someone told me that if I got on an airplane and flew around the world three time backwards and I would be cured...I would find the money to do so. I also KNOW these implants are NOT A CURE for TMJ. There is NO CURE. We can only hope that they will reduce most of my pain and discomfort. I vaguely remember checking in for the surgery and being taken into the OR. I do not remember waking in the recovery room and I do not remember being transported to my room. I do however remember waking in my room and howling in pain!!!

There are NO WORDS to describe the pain I was in when I fully awoke from the implant surgery. I do know that very shortly after I awoke I was put back to sleep. That is a pain I will NEVER forget. EVER! September 24, 2003, last night was the worst night I have had since being home. I am in PAIN! I have no feeling in my fingers or on the surface of my face. Why can't it all be numb? The pain is worse on my right side than on my left.

September 27, 2003, my face is grossly disfigured. I am in PAIN and now both of my ears are infected. I can't take anymore. I quit. I give up. You win TMJ. October, 2003, I am so unhappy. My pain is so much worse on the right side than on the left. And I am still in PAIN! I have very limited use of my right arm and hand. If I try to use it the PAIN is unbearable. I can't believe I have just put my body through all of this horrid torture just so I could be able to eat and drink without pain. Just so I could CHEW my food! And now with the pain I am in I will NEVER be able to chew anything! My mouth is STILL wired shut and I am in PAIN and uncomfortable. The stitches on my stomach have healed and fallen out but I still have a bunch of stitches hanging off my head and jaw lines. I am in soooo much PAIN. Why did I pout myself through this?

November 2003, I returned to Shands and had my wires removed. My teeth are lined up now. It feels like both of my ears have been ripped off an sewn back on. I am still in bad PAIN and my face is still very swollen. I have not been able to get my contacts in since before the surgery, over a month now. I am trying to be patient. I did not want to feel any PAIN! But my PAIN is worse than before the surgery. I know this was a big ordeal for my body and I have to give it time to heal and for everything to settle. I can't move my head at all or it causes sharp intense pain to shoot through my face and neck. I can't open my mouth very wide. I just do not get it. If my arm or leg were cut off an replaced with a fake one, I would no longer feel any pain in that arm or leg. I did not have a left jaw joint and what was left of my right jaw joint was removed. So WHY am I feeling PAIN in both jaw joints??????? They are FAKE!!!!!! I am still having to sleep sitting up. I cannot lay on either side. I cannot put any pressure on either side of my head. My ears are still killing me. I asked and they did not cut my ears off and sew them back on.

Everything is itching and I still have no feeling on the surface of my face not can I feel my lips. My right ear keeps popping off my head. Something is going on with the muscle under it.

December 2003, I have to go have scans made of my face. The problems I am having along with the PAIN are not normal and they think something maybe broken or out of place. Now I am feeling that I do not want these things in me. I am in so much pain I cannot even breath. I cannot get any control over it. There are not enough drug sin this world to get my pain under control. Everything hurts. I cannot even wash my hair much less brush it. I am so weak from the pain. It is just draining my body. I saw Dr. D and the first thing he noticed was my "lump" on my left fossa. He was not happy that I cannot open my mouth. So now I get to do PT to try an work the muscles and break up any scar tissue that my be building. Lucky me. I now get to cause myself more PAIN! He told me I could eat whatever I wanted as long as it was not on the do not eat list. I want a steak!!!!! Hell, I want about six steaks! January 2004, two weeks of PT and I can get eleven tongue depressors in my mouth which is almost two fingers. My PAIN is still off the charts. I am taking my pain medication about 45 minutes before I do the PT so I cannot even begin to imagine what my pain would feel like without the medication. I am still swelling really bad. Don't know what is up with that. Damn it for all the PAIN I am in and all the PAIN I am causing myself by doing the PT something good better come out of all this.

I was doing my PT tonight and all of a sudden it was if a spring loaded gun went off in my head. The vibrations and pain was horrid. It hurt so bad I could not move, I could not breathe, nothing. Bobby was sitting on the opposite end of the couch and the noise was so loud that he heard it. Some thing really bad has happened inside my face.

February, 2004, I have the insurance company from HELL!!!!!!!!!!!! My face is very disfigured, something is horribly wrong and the insurance company is giving Dr. G. A hard time about me getting a CTSCAN to see what I did to my face. Shands of course is wanting to know what is going on and want the scans and I am having to jump through hoops of fire for the insurance company. Why don't they set up an office local so people can just walk in and let a representative of the insurance company look at you then decide if you can have the procedure’s done that your doctor wants you to have done. So if you are is broken and the bone is sticking out you can go in and show them the broken bloody arm and they can give you an authorization. It would be so much faster!

Yep my left Fossa is broken. AND a few of my screws have fallen out, so when I say I have a screw loose I really mean it. I am the first one ever to break a TMJ Concepts. I feel so special! Everyone kept saying it could not be broke because there is just no way and none had ever broken before. Yeah, well they have never put anything in me before! My body can tear some shit up! NOW the million dollar question ....HOW! Of course as soon as Shands takes the broken part out I have to turn it over to TMJ Concepts...hummmm...do I really want it??? What would I do with it? Put it up on the fire place mantle and when people come over I can show it off. Yeah, that right there is my broken left Fossa. Want to hold it? Yeah, that would go over well. NOT! My pain is off the charts! No amount of drugs if even giving me any type of relief. I am going to have to go back on the patch. My entire face is so tender. I am swelling more and more, my eyes are so puffy/swollen I cannot wear my contacts. There is some white slime crap oozing out of my eyes, face, neck and lower back are just throbbing with pain. It is in sync. I have another "lump." So now all I have to deal with is, excessive swelling, my face being grossly disfigured, excruciating pain, not enough sleep and now a new "lump!" Why can't I just have half of my life back?

It has been pouring rain for days now and it does not help my facial pain at all. Sleep is not my friend at all. I am staying awake for 20-28 hours at a time, I am so tired but when I lay down I just lay there. Sleep will not come. And not sleeping makes my pain worse. WHY???? I am so tired I cannot even fight to keep my eyes open but I do not fall asleep. What is wrong with me?

My "lump" is now the size of a golf ball and I can move it around, it is hard as a rock. Due to where it is growing I cannot put my chin to my chest now. I told Dr.M. I was growing an alien baby on the side of my face. It is growing. I am feeling dehydrated and I have no appetite. All the signs that it is a cyst. And it is itching which I am trying to NOT scratch it so it is growing and stretching my skin. UGH! As if I do NOT have enough problems. WHY DID HE DO THIS TO ME????

I saw Dr. R. So he could check me out for Shands, this saves me a 12 hour car ride. My screw is missing on the scan, it could be behind something, and he seems to think the "lump" aka Alien Baby could be an infection. I think it is a cyst. I have all the signs. I have to go have another CTSCAN. Soon I will be a walking light bulb! March, 2004, Bobby and I went to Shands and yes my "Lump" aka Alien Baby is a cyst. And...they found three (3) more cysts in my face. They are just beginning to grow so it would have been a week or so before they became visible. They did drain the big one and told me it was not an alien baby and it did not show signs of infection. They are thinking that either the left Fossa has collapsed and/or I am rejecting the implants. Yes, just what I wanted to HEAR!!!!!!

I now also have tested positive for cervical cancer. So I have to have it cut out. I can't help but feel that all the "other issues/problems" that have developed with my body are some how related or caused by my TMJ.

Okay, the CT SCAN showed that my implant has NOT collapsed and there are no signs of rejection. I just broke the Fossa. How, no one most likely will ever know. I again was told that once the broken Fossa was removed I HAVE to turn it over to be tested so they can see if a reason for it breaking can be discovered, Good Luck...my body hates me and will do anything in is power to cause me pain and torture me. They also think I have an excessive build up of scar tissue and it needs to be cut out and then some...just some...of my pain will ease off.

I am sick again. My sinuses are killing me and it only causes my facial pain to increase and my face is twice as swollen as normal. I am sick to my stomach and feel as if I need to vomit with I cannot do or I will end up in the car going to Shands since NO ONE here will even touch me. I cannot take any antibiotics so I will have to fight this on my own. Dr. G. Said if I got worse then he had no choice but to put me in the hospital and give me antibiotics so they could watch me. I know my resistance and reaction to any and all antibiotic comes from my TMJ. I NEVER had this type of problem BEFORE the TMJ. I am and have been back on "soft foods" which translate into LIQUIDS!!!! I tried to drink some chicken and stars soup and the pain almost made me vomit. I give up!

I cannot rid myself of this cold/sinus infection/flu whatever it is that I have. My face looks as if I have been hit by a mack truck! There is no change in my pain level. What can I say that I have not already said. My face HURTS! I want to brush my hair without crying. I want to brush my teeth without crying then gagging from the pain. I want to put in earrings without feeling like I punched myself in the face. HOW can that MONSTER sleep at night? He should be cursed with TMJ with severe bone loss and not be given ANY pain medication, muscle relaxers ect. at all! Nothing! He has ruined my life, he has made my husband and child have to suffer also. The PAIN make s me crazy at times. The PAIN controls my life and my loved ones' life. They have to suffer with me or leave me just because they cannot deal with this life style any longer. I have seen the "look" in Bobby's eyes-I have heard it in his voice-I have seen it in his body language-when there is NOTHING he can do at all-NOTHING to help me when I am in PAIN-there is NOTHING he can give me or do for me to help me.

When the slightest touch leaves me screaming in PAIN and all I want to do is die to escape the PAIN-the fear in his eyes-the fear in his voice when I beg him to kill me to end my suffering because I cannot take one more second of PAIN-his fear that he knows he cannot be with me 24/7 and the PAIN clouds my brain-my judgment-reality-it is not enough that I must suffer every day because one doctor thought he was GOD and fucked my entire life up-but the ones I Love and Cherish the most-must suffer also. Why did he pick me? Why did he lie to my face? He is a doctor and I trusted him. I believed what he was telling me. I believed EVERY lie he told me. Are we not supposed to trust doctors? I can NEVER get back what he took from me. I can NEVER have MY jaw joints again. I feel so bad for Dr. D. He is having to try and fix someone else's mess. I know he gets frustrated with my case, not with me, but he has such a big mess to try and do some thing with. I know there is NO cure for TMJ and Dr. D. Asked me the first meeting I had with him what I wanted out of this and I said I wanted my life back, I wanted to be cured of TMJ forever and he told me there was NO cure and the best he thought he could do was to try and relieve me of some of my pain. He could NOT guarantee that all my pain would go away but his goal was to get me back some function and reduce some of my pain.

Well it is 100% confirmed, my left Fossa is broke. They are not sure why, but think maybe the bone behind the Fossa is breaking up and there for the Fossa has become loose and breaking up. They really will not know until they get me in the OR and can look at it. Another surgery! April, 2004; now all I am doing is sleeping. I cannot get enough sleep! I have no energy. We are fighting AGAIN, and I have been crying which is only causing me more problems. I have no way to vent. I cannot cry, I cannot scream and yell, I cannot hit anything...UGH! I need an outlet for all my built up rage and frustration! My face hurts so bad. No relief, no comfort NOTHING!

I saw Dr. J. My blood pressure and heart rate are up. She thinks it due to my pain is so bad and nothing is making it ease off or cover it up. I am on enough pain medication to kill a horse and I can't get any relief! And now, my pain is increasing over the last two weeks. I am losing my train of thought, at times I feel confused. I am scared to drive anywhere so I am just staying in the house and not cooking anything. The gas stove terrifies me. What if I forget to turn it off? Nope, I will just use the microwave. It is safer. I am so tired I can barley keep my eyes open. In four days I have slept 53 hours. Something is not right. I am sleeping so heard that I do not hear the telephone ring, Bobby has tried to wake me up a couple of times and he just about has to shake me to death to wake me up. I know I am scaring him by sleeping like this but I have no control over it. He said I look like I am dead and when he leaves to go to work and I am asleep and then he comes home at lunch to check on me and I am in the same position as when he left, his first thought is that I am dead. I hate adding any stress to him.

My surgery has been pushed back to June. They want another CT SCAN so they can try and look at the bone under my Fossa. I also have to have some blood work done to see if something is really out of wack due to my excessive sleeping.

My ears are so sore, again it feels like I have been picked up by my ears and shook. I am falling asleep again and not remembering doing so. I took Gena to school this morning and fell asleep at the wheel on the way home not once but twice! The second time I ran off the road and it scared the shit out of me. But I do not remember the drive to the school or home except when awoke from falling asleep and I do not remember coming in the house when I got back. It is now almost 11:00 p.m. and I cannot remember anything from today except that I fell asleep at the wheel twice. This really scares me. My face hurts and I guess maybe the PAIN was just too much and my brain shut down. I don't know but this really scares me. Maybe I have gone crazy now from the PAIN.

May 2004; I have no hope fro this next surgery. I know I am depressed and I just do not want to be cut on again. I know Dr. D would NOT operate on me unless he had to but I am so tired of surgeries. My left incision line has been itching like crazy and during one of my scratches I found another "lump" within the incision line. And about an hour after I found it I noticed it began to fill up. In about six hours it was full as it was going to get, my skin was stretched so tight I thought it was going to rip and then the cyst just began to ooze on it's own. I guess it could not handle the pressure so it had to relieve it self. The fluid is NASTY@!!!! It has poured out for almost an hour. The fluid is thick amber colored and it smells disgusting. I have been gagging ever since I got the first whiff. I am having to fight to keep from vomiting. Now my incision line is REALLY itching and I am having to scratch it which means I am touching my face and causing myself even more pain! Since this cyst has started draining, I can feel some of the pressure on my face being released.

My sleeping sickness is back. I have no energy to even get up off the couch. Everything I do causes my pain to be worse. Even breathing hurts. My facial muscles have begun tensing up again whenever I drink anything. So I am not taking anything in unless I absolutely have to. Oh yeah and let's not forget about the itching! It feels as if thousands of bugs are crawling all over my face and neck. It has to be from the swelling. I had to take my contacts out since they were getting dragged around in my eyes from my eye lids and I could not see crap. Now I am really blind and I have slits for eyes since I am so swollen. I tried to ice my face but the cold only made me hurt more. So for now I will stay swollen and not able to see just so I do not cause myself anymore PAIN!

Just crappy day after crappy day. I was awaking early this morning by a current going all through my body. At first I thought I was being shocked by the electric blanket so I turned it off an went and crawled up on the couch and the "current" continued. I just could not get comfortable after that episode. Now it feels like the left side of my face is paralyzed. When I am talking, it is not moving and it feels like it is encased in concrete. Now I cannot turn my to the left or look over my left shoulder without causing myself more PAIN. Now my face is very swollen and shock....I found a new "lump," it about the size of a grape. It was NOT there yesterday. The cyst that Shands drained in February is also back. I guess I am being attacked by the cyst. They are going to take over my body! My incision/scar line on the left side has now caved in. Something is not right.

PAIN-PAIN-PAIN-my face hurts, my body hurts. WHY????

June 2004; My new "lump" is now the size of a golf ball, it is purple and squishy. Great! Just what I need. I am so uncomfortable. I am in PAIN. I cannot remember what it felt like to be PAIN free. Do people really live their lives every day without feeling any PAIN?

I awoke this morning to something popping in the right side of my head. It felt like a spring. Now I cannot go back to sleep. I am so scared I broke something else. The pressure from the big cyst just became too much. For some reason and I do not know why, it will not drain its self. So tonight I stuck a needle in it and drained it myself. What a relief! The release from the pressure is un-describable! It took forever fro it to drain down to nothing. It was HUGE!!

June 7, 2004; Tampa Bay Lightning has won the Stanley Cup!!! Once little bit of excitement in my life! I am actually HAPPY!!! I have a reason to smile!

Well I guess the big cyst is not done with me yet. Maybe I should not have stuck a needle in it. It keeps filling back up and then oozing all be it's self. I woke up this morning and my hair was stuck to my face and some of my hair was stuck to my pillow case. It seems it oozed while I was asleep. It is draining itself about twice a day. I am just going to let it ooze. Shands said to NOT cover it up or put anything on it. Let it air dry. So now I am confined to the house for fear it will ooze out in public. Yeah try explaining that one.

I am just not having any GOOD days. Every morning I am waking up in withdrawals. Then it takes hours for me to try and get it back under control. I am swelling more than I should be. I am in PAIN and all I want to do is sleep to try and escape this.

June 10, 2004; I woke up again in withdrawals, I took my pill then laid back down and when I woke up two ours later I was STILL going through withdrawals. The right side of my face is about to kill me. In front of my right ear it feels like something is pushed out of place. I can't touch it. The PAIN brings me to my knees. My "lump" is itching and burning at the same time then it started oozing pus then blood then it stopped then it started all over again, pus then blood. What the HELL? I really hope this new Fossa makes a big change in my PAIN!

June 12, 2004; My "lump" continues to ooze all by its self. Pus then blood. I do not feel it until it get on a part of my body then has feeling. Such as earlier I felt something on my neck and when I pulled my hand away it was sticky liquid and when I went and looked in the mirror it had been oozing for a while since my hair was soaked. I do not want to have this surgery. I know the broke implant has to be replaced but I just do not feel like I am ready to go through this again. I know the "recovery" will not be like September, but I am still going to hurt, I am still going to be sore and very uncomfortable. More so than I am now. Yesterday morning when I got up my throat was sore and it felt like I had a lump in it. I drank about three cups of coffee and felt a little better. I am still tired and have been feeling tired for about a week now. All I want to do is sleep. Then today my nose started running and I just feel like crap and there is so much I still have to do before I can even leave this house for surgery. I haven't even gone to the grocery store yet. The couches have not been cleaned. The kitchen is only half bleached and I have not even started on the bathroom or the mater bedroom. UGH!!!!!!!!!!!! WHY? WHY? WHY??

I am so fearful that they are going to open me up and find another part that has broken or something is going to be so out of place it will have to be replaced. I truly hope that the tightness and pain I am feeling on my right side is just from me stressing about this surgery and from the left side not being right so it is putting more pressure on the right joint. I just cannot handle anything else messing up with my joints. And it is all my body's doing. The implant did not malfunction nor did it break due to it not being of high quality. My body broke it. I really do think that all the bone that was behind the fossa is gone and when Dr. D. opens me up and removes the broke fossa they are not going to see any bone there.

June 14, 2004; we are leaving in three hours. I am still washing the blankets that go on the bed. It has been pouring rain since last night. I am very nervous. I feel sick to my stomach. I had forgot to pay the electric bill so Gena and I drove to town and paid it this afternoon. It is poring outside, the wind is howling and I can hear the rain beating against the roof and the windows. My face has been killing me all day. I think I am clenching my jaws and not catching it. Old habits are hard to break. I feel so overwhelmed. I hope we do not have to drive six hours in this. I need to turn on the weather channel and see if it is moving east, which I am sure it is. The only time it moved west is when we are having a hurricane or tropical storm. I have been itching a lot today also. Most likely just nerves. In 32 hours I will be in the operating room getting my new fossa put in on the left side. I am just so excited. Great Spirit please keep me safe and let all go well. I cannot handle anymore failure. The "what if's" have began to set in. What if they cannot put the new fossa in? What if something has gone wrong inside my face? What if they find another problem? What if this is not a cyst on the left side of my face but an infection? UGH!!!!!!!!!

It is just too much. My brain is on overload. I can't go to sleep because I still have to pack and he is sleeping right now since he has to drive and if I go to sleep we might not wake up in time to get on the road. PLUS, I am still trying to clean the kitchen floor and it is raining so I have to dry it as I clean it. I have a blanket in the dryer, clothes in the washing machine and I still have to small loads of clothes to wash and dry and a load of towels. All of the animals have been fed and watered. And I know as soon as I get in the car I will begin to worry about something!

June 17, 2004; I do not remember very much. We were shown the new Fossa the surgery went smooth. They promised me they would NOT wire me but when I came to in recovery I was wired! They did remove the cyst and scrapped the bone and redid my incision line so it would be smaller. So I feel that some of the pain and discomfort I am feeling is from them scrapping my bone. I have no pain in my joints. Only along my incision and my left jaw line. The nerves to my lips and gums must have been pinched off because now I have feeling again in my lips and gums. Unfortunate for me I am now wired so I feel the wires cutting into my gums!

June 19, 2004 ; I am uncomfortable and in PAIN!!!!!!!!! They got the new implant in and that went well, then they had to scrape my left jaw line where the cyst was to try and keep it from coming back. After telling me they would not wire me.. I am wired and they wired me down. I cannot use a straw, and I can only drink small amounts at a time. I can't even get my pain pills in my mouth so I am on liquid. I have NO pain or pressure within my right jaw joints (YEAH!!!!!! ) but the pain on the left side is about to kill me! It is so shocking to not feel any pain on the right side. I feel like it is a dream. Or it could just be the pain medication. Even when I touch the right side NO pain! I keep waiting for it to strike. It has been sooooo very long since I have not felt any pain on my right side that I am kinda in shock. Enough for now. I am very tired and worn down.

June 21, 2004; Well recuperation was going well. Then Saturday afternoon my throat swelled shut, I could not breathe and I had taken a drink of mountain dew and took way too much into my mouth and choked. The way they wired my mouth down and I mean it is locked down. There is NO space in between my teeth as in the past I have had a width of a grain of rice. Not this time. So when I drink something and that is ALL I can do is drink pure liquid, it has to seep through the teeth it can get through and then when it gets inside the barrier of my teeth I can swallow it. Well, my throat was closed and too much went in so I was choking. I thought I was going to die. I got on the floor on all fours and leaned my head down to try and get the liquid to run to the front of my teeth and/or mouth and it did not work.

I panicked and I REALLY thought this is it, I am going to die in front of my family instead of in an operating room. The "wire cutters" the hospital gave me it seems had been used numerous times in the last 50 years and they will not cut a hot dog. PLUS when they wired me they took the wire and twisted it with two other pieces of wire to make it three thick then looped it and wrapped it around my teeth. Bobby got a pair of pliers and needle nose pliers and poured rubbing alcohol on them to try and sterilize them some what and began trying to cut my mouth open. We were able to get it open but unable to get any of the wires out of my mouth. They must have spent 15-20 minutes putting my new implant in and three hours wiring me. NEVER AGAIN! So we called Shands and they told me I needed to come to the ER, yeah let me jump on my broom and I will be there in a few....then when we called back hours later to tell the intern (I still do not know who he was) that I was still alive and NOT HAPPY AT ALL over this I was informed I needed to come to the ER on Sunday (06/20/2004)...yeah Okay. Mom came over and her and Bobby and me tried to cut some of the wires back AFTER they had un twisted them and got three wires instead of one big wad. Well again.. The wire cutters they gave my would not cut a potato chip (!) So we used nail clippers to cut some of the wires back. I finally fell asleep around 3:00 a.m. and woke up at 6:00 a.m. and called Shands back and was told that I really needed to come to the ER immediately to be checked out and then they would re admit me.

YEAH.. like I was going to jump in the car then. So I told them I would have to call back and I did so this morning. Then the "return call" I was told that I really needed to come onto Shands, I reminded the intern that it is a six hour drive for me and I cannot drive myself without someone coming with me and I would have to ask my family but most likely it would be Friday before I could get there. So now Daddy and I are going Friday and I have to be there at 10:00 a.m. and I am N.P.O. six or more hours before. Which translate to "I will be put to sleep" so they can "re-wire" me. NOPE I do not think so and I will tell them that when I get there. They can take the wires out but they ARE NOT putting anymore in. NEVER. That incident REALLY scared me. I could not believe that after ALL I have been through in the last seven years was going to come down to me dying on my living room floor from choking. What the F@&k? Nope no more wires. As for my jaws today...I am still not feeling any pain. I still at times have a little soreness but not PAIN. No pain. The inside of my mouth hurts like HELL from being all cut up by the wires and I had to swallow my own blood for about an hour and a half, my gums hurt and my teeth feel like they are moving. I talked with Dave today and told him THANK YOU!!!! and a very BIG THANK YOU TO ALL OF HIS STAFF!!!! I have to call again in five days and give him an update. He is going to N.O. the second and third week of July and we are going to try to plan to meet. I have eased off the liquid Lortab and feel very tired still. I am just worn down.

June 22, 2004; I woke at 3:00 a.m. this morning shaking and freezing to death. I could not get warm and I could not put on enough clothes to try and get warm. My fingers and toes were frozen and so cold. I got in the car and sat with the heater on and it was 87 degrees outside. They sent me to Baptist at Nine Mile since it was the closest to the house. G. went with me and we did not spend but about six minutes waiting before they called me back to see the doctor. He was very nice and was very interested in my TMJ "ordeal" and all that I had been through. When all was said and done he felt that I had an infection and that he wanted me to go to the main hospital and that he would call and tell them that I was on my way. Just what I wanted to do. So G. and I drove to the main hospital in Pensacola and they were waiting for me. They took me right back at the main hospital and began the twenty question game. Maybe I should have just printed this entire detail about my life of hell with TMJ and just have them read it then ask me questions. So they ordered more blood test (six vials) and we waited. My white blood cells were just a little off for my "normal" but other than that everything else looked good. I really at some point today thought I was coming down with the flu. But since I was not nauseous nor was I vomiting I began to think it was my sinuses. I NEVER thought I had an infection within my jaw‘s. One day maybe all the doctors will begin to listen to what the patient has to say. So I am going to Shands in three days. No jaw pain again today. Still the only pain in within my mouth and along my left jaw line.

June 28, 2004; well I have found out the hard way I can, will and do feel pain within my jaw joints. It made me sick to my stomach. I packed my face in ice, took a pain pill, a muscle relaxer and a Valium and laid down. When I woke up my face was very sore. I have had PAIN on and off all day. Sharp shooting pain. Not what I wanted to fell. Every time it comes I get sick to my stomach. I am so scared the PAIN is going to come back and stay. Either I have a new "lump" on my face or it is very odd swelling. It if where my left Fossa is. Before they replaced the broken one I did not have a "lump" there and now as the swelling goes down it is more and more noticeable. My left cheekbone and eye socket are killing me. I have even more PAIN than before. WHEN does this stop? I do not want this life anymore. I quit!

July 2004; I got my stitches and wires cut out. As for my "lump" no one knows what it is. I am still having sharp shooting pain within my left ear.

I now have a new "lump" in front of my right ear. It is very painful. I will have to watch it.

It grew twice it's size in about 20 hours and now it is bright purple. It is a cyst. I cannot drink enough water. I am so tired all I want to do is sleep.

I am so uncomfortable and in PAIN. PAIN everywhere except within my jaw joints. All of the area around them is PAINFUL and sore. The PAIN is worse on my right than on my left side. Both of my ears are killing me and draining some gunk crap. So I must still be swelling on the inside. I have decided I am going to give this six more weeks and if I do not feel better than I will call and make an appointment at Shands. I can get one finger in my mouth.

I just continue to swell. My scalp, face and ears are swollen and itching from the swelling. It hurts so bad it feels like my face is going to rip open. I have tried doing the open and close exercises but it only cause more PAIN over my right jaw area then I have PAIN shooting through my face and ear. I am so fearful of breaking the left Fossa again. I cannot move my head from side to side. Both of my ear canals are closed up so I know I am swelling on the inside.

I am in more PAIN than before the first surgery. I now have PAIN in places I did not have it before. My right eye and cheek bone are numb. No feeling at all. My cyst is still there and is now hard so it could be putting pressure on something and causing my numbness.

I am so tired of being in PAIN. Any movement within my face causes me extreme PAIN. I am not sleeping thanks to my PAIN. My right ear is killing me and it feels like it is not attached to my head. It feels like it is twisting off of my head. Very hard to explain. My PAIN is so bad I cannot even think straight. When I woke this morning I was shocked by the level of my PAIN. It made me so sick to my stomach. My pills are not helping at all. I have never felt this much PAIN on my right side. It is so out of control that I put a patch on and now I have to wait 24 hours before that really takes affect. Mt left side is more swollen but my right side is more painful. I am not sleeping again due to the PAIN. I cannot live like this something has to give.

Yeah, it gave, in the past five days I have slept 70 hours. It caught up with me. I am having more and more headaches and each one seems to be worse than the one before. I have the sensation that my teeth are moving again. Time to get out the tooth picks! When I open and close I hear popping noise which I should NOT be hearing. WHEN DOES IT STOP?????

August, 2004; Two months since the replacement surgery and I am not doing "better" I am worse. Why does my body not just accept the implants? I have fake jaws and I still feel pain. It makes no since. WHY DID HE do this to me? Had he been truthful and told me I did have TMJ instead of LYING to me I could have gotten the proper treatment that I needed and I would NOT BE in this situation today. Had he NOT lied to the insurance company and told them I did not have TMJ they would have allowed me to get a second opinion and get treatment. NOW, I have lost way too much bone and my implants are not working as they should because I am "HIGH RISK" thanks to him. He has NO RIGHT to be a doctor or to be called a doctor. Both of my jaw joints are gone and I will NEVER GET THEM BACK! Because of him!!! He thinks he is God and he will have to pay for what he did.

I am now questioning myself as to why I had the implant surgery. But then again if I had not gone through with it I would be sitting here wondering if I would be pain free right now if I had gone through with it. So a part of me is glad I did it so now I know and I am not sitting here wondering what ifs.

I started taking steroids to try and reduce the swelling in my face. My PAIN medication has been increased to try and give me some relief. I have been putting the patch on for 24 hours then taking it off and putting a new one on 48 hours later. In short the PAIN is way too much for me to be able to function much less deal with. They continue to x-ray, CT SCAN, ect and everything looks right on film but no explanation for the "lump" over my left Fossa.

September, 2004; my facial PAIN is horrid. NO ESCAPE! Nothing helps. No pills, no patches, no heat, no ice, NOTHING. I am suffering something terrible. I continue to remind myself somewhere there is someone who is worse off than I am.

September 14, 2004; we are packing EVERYTHING we can. Ivan is a category four hurricane and expected to make landfall in about 18 hours. The news has nicknamed him Ivan The Terrible. Lets hope he does not live up to his name.

The cyst in front of my right ear has swelled up to the point it started peeling my skin back. The pressure was horrid so I stuck it and it oozed for about an hour.

September 21, 2004; we were able to get back home. That hurricane is something I will NEVER EVER stay for again. Ten hours of howling wind and rain. Around 11:00 p.m. it must have been very close to us because I could feel the pressure dropping by my face and around 1:00 a.m. I thought my implants were going to explode out of my face. It felt like they were breathing on their own. In and out. Expanding then sucking pack in.

At one point my face was in sync with the garage door. Everything hurt. My face, my eyes, my teeth, my ears. There was NO sleeping to try and escape it. I would lay there and just as I would get comfortable something would slam into the boards on the windows or be dragged across the roof, it sounded like a team of horses running across the roof. Then around 2:30 a.m. the ceiling in the garage fell in and it was a chain reaction after that. The kitchen came in and them the mater bed room closet and bath. Water was dripping in everywhere. And at that point it felt like the hurricane would NEVER pass and go on its way. We you look out the front door and see and entire tree roots, dirt, grass coming down the street just as if it were walking but knowing it was being carried by the strong wind. Creepy. For the future if it is a category two of higher I am leaving! We were without power for three weeks and I stayed in the house most of the time for fear if something happened to me how would I get to Shands?

The interstate bridge had be washed out by waves. Just looking at that bridge and seeing that water knocked the concrete and steel until it was gone. We were trapped. The only way you could go was west and that was ONLY of you had gas to get you there. Thursday morning when we came out of the house around 9:00 a.m. and I looked around, I cannot even describe it. My mind just shut down. Your first thought is I pray there is no one still in that pile of debris that used to be someone's home and if they were in there you pray that they got out.

October, 2004; another month of PAIN behind me and another one to look forward to. I am now being awoke from sleep by my PAIN. SO I do not know if I am turning over in my sleep, or if I am grinding my teeth or what I am doing to cause the PAIN that wakes me up. Once I am awake I cannot go back to sleep for about an hour.

It has been one month since Ivan slammed into us and our lives are nowhere back to normal. The pharmacy I use was hit very hard so they are not up and running yet. I had to go to five different pharmacy to find one that could fill my oxycontin prescription. That was a fun day! And off of this had to be done in the day light since it is not safe to drive on the roads at night due to debris and we are still under a curfew. Dawn to dusk. My PAIN once again is getting beyond my control so I have had to go back to the patches again. My face hurts so bad right now that if I took a hammer and smashed it in it could not hurt any worse. The cyst on my left jaw line is growing and now moving downward along my jaw line. NICE! At one point my PAIN was so intense that I could not see, my eyes blurred all I could hear was the Gulf Of Mexico in my ears, I swear I must be dying. No one can live through this kind of PAIN. I am afraid I am going to rip the skin from my face. I have scratched it so much it is now bleeding. I live in horrid PAIN 24/7.

November 2004; No change in my PAIN. Something is really wrong with my Fossa's. I can just feel it. All I want to do is sleep and escape the PAIN. I have started taking the sleeping pills again, at least then I know I will sleep for at least ten hours before I wake up. Ten hours not feeling PAIN! Now if it were only possible to do that awake! My life is run by PAIN and Pills! Just what I planned for my life. That is why I went to college. Something has to give. I am now dreaming about killing him. I want him to suffer as he has made me suffer. I wake up thinking I really did it and have had to go as far as to go out to my car and touch the hood to make sure it is cold. The dreams are so real. Every time I look in the mirror and see myself like this I want him to pay. He took my life away from me!

December 2004; I still have two cyst. One very large one along my left jaw line and one small one in front of my right ear. The steroids have helped with some of my swelling but all it did was make my left hump much more visible. Dr. G. sent me for an CTSCAN and that came back all looked normal. The hospital sent a CD of the scan to TMJ Concepts so they could take a look at it and it shoed that my left Fossa is VERY displaced and my right slightly displaced. They did what they needed to do and sent a report to Shands for my visit coming up. So once again had I listened to what the hospital had to say I would continue to suffer. So here comes another surgery. Maybe we can post pone it for a year or so. Right now, I just do not have the strength to under go another one. I still have my faith in Shands and I feel they will get right soon or later. It is all just a matter of time. And maybe they will come out with a pain drug that really does block the pain and not put you in a fog so I could live just a little. I still have faith also in TMJ Concepts and I know each one of is unique and different and thy also will figure me out and get me right.

January 7, 2005; what a way to begin the New Year. Trying to tear up my implants! I went to Shands today. Daddy and I left about 4:00 a.m. our time and arrived at Shands around 10:30 a.m their time. I was greeted by an intern I had never seen before and he did not seem to have much knowledge about my case. (READ the file!!!!) After I explained to him why I was there (DUH!!) He went to find the Doctor. The Doctor sent me for a couple of new scans and then reviewed everything. My left Fossa has come out of place, why(?) no one knows.

I feel so bad that the Doctor does so much for me and to try and help me and my body just continues to screw things up. Every time I am at Shands and there are new interns my heart skips a beat for I know what can happen. I pray that they listen and try to emulate the Doctor they have the privilege to study under. For one day should they develop the "God Complex" he will not be there to try and clean up their messes as he has been trying to clean up the mess of the doctor who told me I did not have TMJ and I was lying about my symptoms. I hope these interns learn to be 100% truthful with their patients and learn to admit when the case is too complex and/or over their head.

The "lump" along my left jaw line was aspirated and it does not look good at this time. It has not acted like a normal synovial cyst, such as the steroids seem to have NO effect on it and it really hurts. And what they drained out of it looked like nothing I had EVER seen taken from my body before. So now I am sitting and awaiting the test results. Should it turn out to be an infection or reaction I will be having surgery sooner than I wanted. Within 14 days. Lucky me. If it should be something other and I am able to wait than my next surgery will be June 22, 2005. I have been ill since my return and I know it is due to the turmoil I am causing others and that for some reason my body just does not get the picture/point that they are only trying to help me and for whatever reason continues to screw things up.

Again the WHYS begin. Why did he lie to me, Why did he not treat me properly? I guess because of the care I have received from Shands I cannot understand nor grasps why he did what he did to me. I have learned from this life altering experience that if you are not comfortable or feel something is wrong, such as a doctor getting in your face and telling you that you are lying and just trying to get pain medication from him then RUN!!!!!!!! I have NEVER since that doctor been treated as he treated me. NEVER since him.

I know now it was not right and I should have trusted my family doctor more and listened to myself and RAN!!!!!; And speak up! This is your body, ask questions!; Do research, find out if the dx is a member of your state Better Business Bureau, Dental Association, the American Dental Association and/or the American Association of Oral & Maxillofacial Surgeons. Check out the Angels United ON TMJ site for the web address. I know the PAIN can and will make you make rash decision that you would not make under normal circumstances. Just do your research! I will update this as soon as I have new information.

NEW UPDATE-JUNE 30, 2005

Shirlett keeps a daily diary of her daily life living with tmj. to make it easy to keep us updated on her life!

January 8, 2005; for the past six - eight weeks my body has been screwed up. I think it is a combination of ALL the pills and PAIN combined. Either I slept excessively such as 17 hours out of 24 or I swing to the other side and sleep eight out of 48. So I am sure the "sleep issue" is not helping me. If I could just get the PAIN under control, I feel I could function better. I might even have a shot at having a life.. Yeah, what is that again? I have forgotten. My life revolves around PAIN, pills and sleep. I feel so dis-attached from my family and not just my parents and sisters but at times even from my husband, child and step children. I do not like this feeling.

January 28, 2005; I had to go see a shrink. I now have confirmation I am not crazy and that the PAIN is what makes me seem crazy but, I do have an "anger management issue" and I need to get help for that. Hum....how can I have an "anger management issue" if ALL of my anger is the direct cause of ONE PERSON? Yes, I have anger at the a***#^e who screwed my jaws up. I also have a serious amount of guilt that Bobby and Gena have to share this life with me. Again, the WHYS begin. WHY did he pick me? Why did he decide to screw my life up? Is it not fair that he should have to suffer as I have? I do not think that is anger. I think this it is only fair. I WANT him to suffer. I want him to be in uncontrollable PAIN. I want him to lose his ENTIRE LIFE as he knows it just because ONE person failed to perform their job. I am leaving in the morning to ride (Cathy is driving) to Talladega, Alabama to be with Dawn and support her. Mario is leaving for Iraq. I do not know how she is dealing with this right now. She is sending her husband off to Iraq to fight a war and needs ALL the mental and emotional support she can get. I feel so much for her. I cannot even imagine putting myself in her shoes. All that I have gone through and still will have to under go and I really do not think I could do it without Bobby and Gena by my side and she is sending her husband to fight a war. There is no coming home on weekends or two weeks of leave to come home. I worry for her and my heart aches for her PAIN and sadness. She has ALWAYS been there, right beside me for the past 20 or so years and this is really the first time she has really needed me that she called and said she needed me. She has been by my side for every thing. She even tried to talk me out of my first marriage by telling me her vehicle was right outside and we could go. The first summer my TMJ began and got so out of control we were together every day. We went everywhere together and did every thing together.

February 3, 2005; As of today my surgery has been rescheduled for April 6, 2005. The Oral Surgeon decided my surgery just could not wait until June. I came home yesterday from Talladega and some thing has changed inside my face. When I got up this morning, it was like everything settled, or went where it was suppose to be with the exception of my left Fossa. I cannot explain it. Mt PAIN is about a 2� - 3 today and it really is freaking me out. Maybe my face is still frozen. It was like 21 degrees up there, snow, ice, wind the whole works and most of the time I could not feel my hands nor feet so maybe my face froze. Weird. I have slacked off the "pills" to see if the PAIN comes on stronger and so far nothing. It is holding its own and I can deal with this. It is not bringing me to my knees or taking my breath away.

February 5, 2005; my PAIN is still staying the same. It is kinda scaring me. I spoke with an intern and his response was I could have a "pinched nerve" yeah . . . if that was the cause I think it would have happened sooner than seven months AFTER my last surgery. HELLO! So I am not buying that answer. The "lump" along my left jaw line has begun to grow again and it is on the move. I want to cut it out myself. When it reached a certain weight, the pressure on my neck muscle is horrid. All of my PAIN is centered around that "lump." My joints feel great! Okay, I spoke to soon. Tonight, while I was shampooing my hair, I hit a tender spot, nerve something. I thought I was going to die in the shower. The PAIN took my breath away, my knees went weak and I really thought I was going to die in the shower. I got out and took another PAIN pill and the tears just poured out of my eyes without any help from me. I have not felt PAIN like that...well since I woke up from the implant surgery. I really thought my heart was going to stop beating the PAIN was so intense. It was a stabbing and shooting PAIN at the same time all through my scalp and face then my right ear just had to get on the PAIN wagon. I am going to bed to escape it.

February 6, 2005; when I awoke this morning, it was as if last night never happened. Like I dreamed that kind of PAIN. I did wake up in full withdrawals this morning and that is something that has been going on. Since my PAIN has been so greatly reduced, I am forgetting to take my PAIN pill until it is too late and the withdrawals have begun. So I really need to speak to the Oral Surgeon about getting OFF the oxycontin during my next surgery in April. I just cannot del with it any longer. Yeah, and while he is in there maybe he can make ALL my PAIN go away also...HAHAHA. One day that will no longer be the joke!

February 19, 2005; I made it through another birthday. My PAIN level has stayed very low and I no longer worrying about why, I am just enjoying it. Until this afternoon. I felt I had a crap in the muscle in the back of my neck so I tilted my head back to roll my neck and I felt a BIG RIP, before I could react blood was pouring out of my mouth and PAIN was shooting through my mouth. My left bottom lip had been swollen and I guess I did not realize how swollen it was so when I tilted my head back the skin inside my mouth that holds my lip to my gum ripped away from my gum. And to make things worse I was stuck on the interstate in a traffic jam and there was no where I could go so I just opened the car door and spit the blood out, applied pressure to the bottom of my lip and as my mouth filled up with blood I would just open the door and spit it out. I made it home about 30 minutes after it happened and before I even put my purse down I got an ice pack out of the freezer, did not even get a towel, just put it on there. I called Mom at the hospital and told her what happened and my then I was crying because I was so freaked out by what had happened, my lip and chin had swollen so bad my speech was slurred. What the hell was that all about? I called SHands and spoke with another intern and he told me to "come on in the ER and tell them I was Dr. D. patient and they would page him" yeah.. okay I explained I was six hours away and I would send an e-mail, thanks for all of his help.

February 20, 2005; my PAIN today has been a 3. My lip is still very sore. My "cysts" are really hurting. They have filled up so much that my skin is peeling and is now I can see seven layers of skin. The one along my left jaw line is throbbing is it so full. It is bigger than an egg and it hurts to touch it. My entire left jaw line and part of my face and throat is dark purple. I can no longer turn my head to look over my left shoulder since it is putting so much pressure on my muscle and the area on my neck is bulging. Well, I do not have to worry about that any longer. It started really throbbing and hurting so I leaned over and asked Bobby to look at it and he said it just "looks nasty" so I went on reading my book and about 30 minutes later my neck and chest felt wet, so I looked down at my trim of the white tank top I was wearing and the trim was green and yellow. GROSS! So I went into the bathroom and the nasty thing had just busted and was oozing all over my neck and chest. I cleaned myself up the best I could, called Shands and was told my the intern to let it drain, do not cover it and call back if it did not stop. That put fear in my head. So we let it drain for about 45 minutes then it stopped. I thought it was finished. WRONG! About 5 minutes after it stopped it began to throb again and I could feel intense pressure so I applied a little deal able around it just like they did when they drained in on the 7th of January and this white nasty stuff shot out of it and began to just ooze out the smell was so bad I puked I had to get out of the bathroom but yet I did not want to get in the bed or on the couch with it draining like this so I sat in the hallway floor. The more it oozed the dizzier I got. About 20 minutes after that it had gone back to just oozing the green and yellow pus. I guess in all it was about an hour and half before it had emptied it self. It was so nasty. It takes a lot to turn my stomach, but that did it. I sent another e-mail to the Oral Surgeon and the implant maker. The good that came out of this is all of the pressure and throbbing has stopped.

February 27, 2005; my PAIN is still very low and deal able. The large "lump" continues to drain its self as it sees need. This month is almost over. My bottom left lip continues to swell so I am having to not roll my head or tip my head back for fear my lip will rip again. I want OFF THE OXYCONTIN! I am withdrawing almost every morning and sometimes twice a day. I forget to take the pill AND now every time I do take it I get sick to my stomach. I have tried eating before I take it, while I am eating and right before and the only thing that works is if I do not take it then I have to go through withdrawals. I did for the first time in about five years....eat corn on the cob. It tasted sooooooooo good. I ate all of it and then decide okay, I will pay for it tomorrow or later tonight. Nothing happened. It was so awesome to use my teeth and jaws to really eat something!

March 3, 2005; a month now and my PAIN is still very much the same. My surgery has now been rescheduled for March 23, 2005. WOW! Twenty days to go. I am torn. Part of me wants just get to get it over with so I can heal and see if this reduced PAIN thing is for real Plus I want off the oxycontin. Then on the other hand I am fearful of the PAIN I KNOW I am going to feel after the surgery and what if this surgery brings back all of the PAIN and it stays. Summer is coming up and I want to go to the beach and I do not want to be healing from a surgery but then again if I go ahead and get it over with. I do not know. What I do know is I am having surgery at 6:30 a.m. on Wednesday, March 23, 2005 and NOW he is going to cut me from the top of my left Fossa all the way down to my jaw line. More stitches! PLEASE let this be the last surgery for years! Never again would be really nice but that is not reality. On Monday and Tuesday I do not know if I did something or if I slept wrong but the skin over my left Fossa and in front of my left ear was really swollen. It swelled so bad my ear was not visible. I do not know what was up with that.

March 7, 2005; me Gena and Bob went to Talladega on Friday and stayed at Dawns. Then Saturday we got up and drove an hour to Atlanta, GA and went to Six Flags where I walked for eight hours. I wanted to ride so bad!!!!!! Dawn and I even joked and checked out a few rides with the hopes that maybe if I got on it and rode it the force would push my left Fossa back in place. I was to chicken to find out! HAHA. It is all okay, because as soon as I heal from this surgery on the 23rd....I will be riding! We bought season passes for Six Flags and the water park. So I will be enjoying myself this summer. We got up Sunday about 8:00 a.m. and I knew I was in trouble when my feet hit the floor and my knees were jell-O. But instead we drove up to Mt. Cheaha and spent another four hours walking. Then we got in the car and drove three hours home. I could not walk when we pulled up in front of the house. I crawled out of the car. But we had a great time and I really enjoyed spending time with the kids like I want to and should have been able to do for the past nine years. I really hope this is a positive sign that things are going to get better.

March 9, 2005; when Gena got out of school this afternoon we stopped by Wal-greens and picked up the film from our trip. I was shocked. I know I closed down last night and Bobby was concerned but I could not help myself. After everyone went to bed last night I cried and cried and cried. My face is so deformed. I look like… I can't even describe how bad my face is. It is smashed in some places, it sinks in and then it juts out in other places. I do not even want to go out in public. It looks like half of my face has been cut off then my mouth and nose were reattached to what was left. What mirror have I been looking in? I knew it was somewhat disfigured but I had NO IDEA IT WAS THIS BAD. It makes me sick to my stomach to look at those pictures. I look like a monster! How can Bobby look at me and find me even one percent attractive? I am repulsive. I did not look this bad last summer. I went and looked at the pictures that we took and yeah I looked bad but not this disfigured. I am so hurt inside. I am crying now as I write this. I was never a vain person and always thought I looked decent but since all of these surgeries I look like a monster. Enough for now. I am just way too emotional and cannot deal with this right now. I want to go hide in bed under the covers!

March 16, 2005; my facial PAIN is still very low maybe a two. This afternoon I started having sharp PAIN in my left buttock and it runs from right under the left buttock up into my lower back. I might have pinched another nerve. I will go see Dr. B. in the morning. I do not want anything to mess up our trip this weekend. I am having my freak outs over the surgery. This time next week we will be getting ready to leave in two hours for Gainesville. So I am flipping back and forth as I ALWAYS due right before surgery. This time next week I will really flip out and throw a temper tantrum and say I am not going. I want to just get it over with so I can heal but at the same time I do not want to put myself in any PAIN and I know I am going to be in PAIN after the surgery. I have my History and Physical at Dr. G's office tomorrow and then I have to finish cleaning the house and getting ready to leave for Gainesville. Next Tuesday will be a really bad day for me. Emotional, stressful just crappy. Saturday night (03/12/2005) I do not know what happened to my face but both of my eyes were black and my cheek bones were swollen. I looked really bad. It kinda freaked me out when I looked at myself in the mirror. I was very relieved when I woke up Sunday morning and looked in the mirror and the swelling had gone down and the darkness around my eyes and on my eye lids was slowly fading. I do not know if I was just overly tired or what. But I really looked bad. I put some tiny turquoise studs in my ears Monday (03/13/2005) just to make sure my holes had not closed up and for the first time I got to see just how uneven my earlobes are. One is much shorter than the other and when I wear the tiny studs it is very noticeable. Just something else to cry over. I think that when I was in so much PAIN I did not have time to notice how fucked up and disfigured my face really was. Now that my PAIN has lessened and I have reduced my PAIN medication dosage I am really seeing myself with clearer eyes and I am just horrid looking. And the more weight I lose the worse my face become in appearance. I do not know if we will ever have the money to fix it or at least get some type of plastic surgery to try and correct some of the disfigurement. UGH!!!!!!!

Okay, I have to stop now or I will start bawling again and crying does make me swell.

Read more on what happen next! Photos of Shirlett and her 3 D CT SCAN!

2008 and 2009! She is having the Tmj Concepts put in again!

March 27, 2005

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