For those of you new to my blog, Far Guy has Trigeminal Neuralgia Type II..atypical facial pain. He was diagnosed on Christmas Day 2007. From time to time I do updates on "Our Situation" .. our struggles..our sucesses (not many) and our failures. Presently he takes Tegretol and Neurontin to try to control the pain. The support group that we formed back in October has gone by the wayside..however we still keep in contact with some of the people in our area that also are afflicted with this horrible disorder.
Somedays even though Far Guy is better..he is worse. He does not want to talk to the Nurse Practitioner on the phone anymore. (Y'all know how I feel about talking on the phone.) He is totally capabable of talking to his own Nurse. A dedicated one at that, she called this morning..on a Sunday, her day off..because she cares and had not been able to return Far Guys call on Friday. They discussed his medications, she is just as confused as we are..why somedays are better and some days are not. Far Guy will work up a pain graph for his Nurse, once she has a look at it..she will increase his Neurontin. That is good news..I was afraid she might want to increase the Tegretol again..
Somedays I get SO frustrated with prescriptions.. numbers of pills needed..prescriptions changing. Being in the middle sucks. Far Guy is off in La La land with his prescriptions.. He told me "I have enough of that prescription to last at least another month." I started counting the pills.. eight days is not a month...at least the last time I was totally sane..a month was thirty days. We need a new prescription. Far Guy says "OK, guess I need a new one"..
I wrote a letter concerning medications and refills to his Primary Care Physician that is local.. I have found that Doctors may or may not return your phone calls..but they usually respond to letters. It is a paper trail, I think that leaving one scares the bejesus out of most Doctors. Anyway, I wrote it all out for Far Guy..told him to type it up or send it just the way it was..longhand and signed by me..
I have learned that Trigeminal Neuralgia is an extremely frustrating rare disorder. I believe we are on a better track after our visit to the U of MN..but Far Guy is getting a little/lot stubborn on me. I want him to be pain free, but he is willing to cope with the pain as long as it is not excruciating. We differ in our opinions, we discuss it..he is supposed to keep a pain diary..I sometimes fill in for him..It is a medication/pain log that sits near the bottles of pills in the kitchen. He has stopped keeping track, he is digging his heels in..If I ask him what his pain level is..he ignores me..or gives me a number that makes no sense what so ever..a million, five hundred thousand and thirteen.. all that tells me is that he does not want to share. The pain level is only 1 through 10.. I can usually tell what it is..if he is on the couch it is a seven, if he is in the bedroom it is above a seven. If he talks funny, biting down on his cheek while speaking..it is a five..if he is really cranky and pacing or just holding his head in his hands it is a ten. God, I hate tens. There is no rhyme or reason to the pain fluctuations, one day can be miserable as all get out of Far Guys way, the next the pain is tolerable. If only I could find a clue to the answer of why the pain fluctuates..the weather..the wind..chewing..it is like looking for a needle in a haystack.
Far Guy has a theory..shit happens..AND he thinks that the nerve only has enough energy to transmit the faulty signals for so long (the most painful times) then it burns itself out..and he can have a day or two with less pain while the nerve builds up the ability to transmit the faulty pain signals again.
He is much better than he was, he is not in a fog, but he is more moody..and cranky..uffda..somedays. The real pits is that everything revolves around pain, most things that we do are on the spur of the moment..if Far Guy feels good and is having a good day..we can get out and about. Bad days we just stay home..pain sometimes hold us hostage. Somedays he is a real trooper and says "I can feel just as rotten anywhere we go."
Somdays I wonder, why a good, kind person like Far Guy has to suffer so much. Somedays I wonder what I can do next. Somedays I would just like to give up, just like the Medical profession and research has..but I can't..cause Far Guy has it everyday...
Chance is very intune to Far Guys pain, he leads him to the couch, he comforts him by licking his hands. He does what he can in his own way to make things better. We TRY to laugh everyday, instead of cry, we try to make the best out of every day, somedays I just need to unload:)