Five Years of Pain and Counting
Home alone for Thanksgiving again. I’m alone for most holidays lately. I don’t really mind because I don’t like holidays and I’d just as soon be home alone. My kids go to to their Fathers because its a big family ordeal and I don’t encourage them to come here because I hurt too much and can’t handle it pain or energy wise.
I have avoided blogging lately because when I am depressed, and I have been depressed for many years, I can get kind of morbid in my writing. I have been fighting TMJ pain and tongue pain for the last five years The tongue pain and pulling feeling nobody has ever been able to figure out.
I ended up at the University of Minnesota TMD Clinic and saw a TMD specialist who worked so hard to figure out what was going on. He was so great and really cared. That was comforting. Then I saw a movement disorder specialist and was handed the wrong diagnosis of orofacial Dystonia, a neurological disease. Because of this, my treatment was based on an incorrect diagnosis. This is at a major university that is supposed to have the best people there.
A CT scan revealed a solid mass near my jaw. It also revealed that my jaw joint was not where it was supposed to be and really deformed, and many other issues. So, a world renowned surgeon went in, cleaned up a lot of arthritis, saw instead of a mass it was material like bone fragments (obviously from my injury), etc. He cleaned it out and closed me up and never said another word. A doctor I had seen earlier at another place called it right away. She asked if I had trauma to that area. At first I couldn’t remember but later remembered my grandsons head at 18 month flying directly into my jaw. I fell off the couch, major pain, ice and it got better. I forgot until it started causing problems. I asked the surgeon and the U whether it could be trauma from the injury and he said it had been too long. I won’t bore you with all the medical stuff.
I had horrific muscle spasms and couldn’t eat because they would start to spasm. My tongue was involved, pulling to the right and I have had all kinds of tongue pain which seems like nerve pain because I have apparently phantom feelings on my tongue from the beginning, and kept getting worse as the years wore on. My bite was constantly moving because nobody was doing anything about it, and my tongue was always out of place. On top of that, my teeth didn’t touch on the right side. I needed crowns but couldn’t get them because of that. I still haven’t gotten them because I’m afraid an injection of novocain to fill wisdom teeth years ago may have nicked a nerve and caused it, affecting my tongue only, but I didn’t know anything about this stuff then.
I went back to my original general neurologist at the U. He was great. He felt really bad, but said he could not find anyting neruologically wrong with me. I had already begun to question my neurological diagnosis because I kept getting worse. Finally, a referral to Mayo. Ultimate Jaw joint replacement and jaw reconstruction due to post-traumatic injury. If only the other surgeon would have know this it would have saved me two years of pain and may not have been as difficult to work with as it was.
I promised myself that if this wasn’t corrected with the surgery, which I thought it would to some degree, I would be done and would end my life. I tried to kill my self once but couldn’t do it. I wanted to die in the worst way. I couldn’t take the pain, or a million doctors appointments, trial and error, being a guinea pig many times to see if some drugs would work. I’m trying one now and I either sleep or feel foggy all day, and I have memory loss and I am just all around “out of it.” We are titrating up on the dose for the next three weeks. The surgeon said if this doesn’t work, we’ll try another drug. I’m stopping after this one. I have researched incessantly and people with similar problems never get better. I need to try to endure the pain for as long as I can so I can move on with my life. It’s going to be very difficult, even without any pain.. My lack of any personal life and the extreme loneliness is almost as bad as the pain, possibly and likely caused a great deal by my homelife and job and financial issues. I have also tried every holistic medicine, including acupuncture, but nothing worked.
I still want to die. I feel like I am just taking up space here for no reason. I can’t seem to kill myself right now, and I can’t for a couple of reasons in the next few months, but I wouldn’t mind if it just happened accidentally or a heart attack or stroke (but please kill me). I don’t want to be here. I have kids I never see and a grandson I do see(he makes it the hardest) and I’m not ready to leave him yet. But the pain is miserable and do not know how long I can live with it.