Seems like all we do for entertainment is sit in waiting rooms, lounging around waiting for our name to be called. What with my eyes and my shoulder..and then the regular appointments.
A clock, a cash machine and a computer in a local waiting room.
Far Guy has to see the Neurologist every three months…yesterday was the day. We really like Dr. P. he is genuine, or the real deal. For those of you that may not know Far Guy has Atypical Trigeminal Neuralgia..a rare disorder that causes him pain on a daily basis. He was diagnosed on December 25, 2007.
Water feature at the Clinic, ninety miles away.
I cannot stress enough that anyone with this disorder find a Neurologist that you can work with. Our Neurologist is kind, I cannot imagine that he would not return a phone call or leave us dangling and waiting for the phone to ring for days like previous so called medical professionals. He knows how to count pills..you need many meds if you have TN. Sometimes in different dosages. Through teamwork.. we are achieving a better quality of life for Far Guy. No it is not perfect..what would be perfect ? I am not sure. There are little things that we can do. The monster known as TN has a mind of it’s own. Pills..take them on time..I am a real bitch about this..some days he forgets..one day he forgot his meds all day long. I saw red. I dropped the ball. I need to be more vigilant. Head coverings..he has several but he leaves the house without them..so I usually grab them. The cold wind will bring on painful lightening bolt zaps. It is not an easy disorder to deal with..but we are doing the best we can. Chance is very much in tune with Far Guy and if Chance thinks he should lay down, he takes Far Guys hand in his mouth and leads him to the couch. Some evenings he turns down the bed..
If anyone out there ever wants to contact Far Guy his email is geneo532000(AT)yahoo(DOT) com he is more than happy to communicate with anyone that has this hideous forgotten orphan disease. Sometimes it helps to know that you are not alone, he has several TN friends that call him frequently.
Dr. P. knows by now that I will always ask "What is new? Is there anything new being studied or tried with TN ? " I have to ask..and the answer is always the same.."Nothing new." I think perhaps Dr. P. reads my blog, yesterday he said that Far Guy was a model patient and a joy to work with, and that all Neurologists should treat their patients with the utmost respect. He also shared that Neurology is the thing that gets him up everyday…because he loves his work. Far Guy and I are FINALLY at home and comfortable with a Neurologist. It has been a long journey.
My shoulder is much better, I am still doing exercises every day to improve my range of motion. I may have to get out the duct tape and tape my arm to my body at night. I injured it the other night, I did something in a sleep walking episode that locked it up..it might have involved a coffee table. I woke up on the floor and could not move my shoulder..it hurt..so I rubbed it and gently unlocked it with my other arm.. it is a little sore..but not bad. I don’t bawl every time I put my coat on anymore.
My eye is doing great, Far Guy puts drops in it and I get rechecked on Friday. I will be glad when the other eye is done, my eyes still fight, the new improved eyeball is winning and takes over more and more. I wear a clear plastic eye patch at night so that I don’t rub my eye. I am pretty cute with the eye patch, now if I duct tape my arm..I ought to be a real fashion statement in my thermal nightgown with my fuzzy red socks:)