Tuesday, February 2, 2010

Medical Updates

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.
What more could you need in a local waiting room?  A clock, a cash machine and a computer. 


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.
A water feature in 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:)

22 comments:

  1. I am so encouraged to read that you both are still pleased with Dr. P. Our neurologist is a Dr. P too!!! Having a dr. who listens and concentrates on his patients and their needs is so important. I had to laugh at your description of flannel, red fuzzies, duct tape and an eye patch. Better to laugh than cry. I hope you have great success with the other eye and I hope your shoulder continues to be less painful. You both (and Dr. P) remain in my prayers and my heart dear friend.

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  2. Oh my! I just got a mental picture of you with eye patch, duct tape, nightgown and fuzzy red socks...it made me laugh out loud. Thanks...I needed that! This getting old is the pits....but considering the option, I guess we'll take it. Glad you're doing well.

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  3. Glad you are both in good hand.
    I posted those tintype's could you see what you think?
    Patsy

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  4. After suffering through many neurologists myself, I understand the importance of having one you like and trust. Thank goodness Far Guy found one.
    I think it is fantastic the way you look out for one another and help out with whatever the other needs.
    Glad to hear your shoulder and eye are much better now.

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  5. Could you post of picture before you go to bed. I just think we could have a caption contest with that. I'm glad that you like the neurologist. It can be a lonely feeling dealing with Drs.

    p.s. on the "waiting"- all the more reason to take up crocheting. Besides the hook fits better in a purse than knitting needles.

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  6. I'm so glad that you are happy with your doctor. That is so important when getting treatments for anything.

    I hate waiting too. They make you an appt and you get there a little ahead of your appt time and then you still sit there for seems like hours from one room to another.

    Glad you are doing better Connie.

    Chance turns down the bed? Take a picture.

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  7. I am second in line to be sure my wife takes her meds for CHF. They are not to be skipped as she had to be put on them gradually. If she misses, her heads start throbbing. I try to always keep an eye on it and I hate myself when she doesn't get that evening set taken and we don't discover it until next morning. I tend to shake the pill box at night right after I lock the front door.
    I hope you can get yourself back on the mend here before spring. It isn't an easy row to hoe but you two seem very determine to stay the course.

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  8. That is a very interesting post. I know nothing about TN except what you have explained, and it sounds like one of the worst things to have. The fact that Chance takes care of Far Guy is so sweet. I agree with Becca: take a picture of him turning down the bed! Far Guy is so fortunate to have the three of you (including the dr). Hugs!!!

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  9. Eye patch, duct tape, flannel jams, fuzzy red socks, now that's a club to join! Glad to hear that the doc is a good one. It is important to have a good relationship.

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  10. Glad all going well - one day at a time!

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  11. You guys are troopers! You've made it through a lot, so I'm sure you'll continue on, one day at a time. Have you considered a scarf to hold your humerous to your ribcage at night? Might be nicer than duct tape!

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  12. A good doctor is someone to treasure. I always keep Far Guy in my prayers, none of us knows what he goes through. You take care of yourself girl, especially during sleepwalking episodes. Now will you tell me how the heck I'm gonna get the image you painted of yourself out of my head???

    Have a good night, maybe Far Guy should use the duct tape to tape you to the bed. Heeeheeh!

    God bless ya'll!!!

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  13. It is a true treasure when you find a doctor that does care. I have finally found one and thank God, every time I go visit.

    Like the duct tape idea!

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  14. Bless Far Guy's heart - - an expression heard often in the South. What a bummer of an illness to deal with - - - but what a beautiful doctor's plaza to visit! I, too, like Nezzy's idea about duct taping you to the bed to prevent further injury. Too cute of an idea.

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  15. Sounds like your days are getting better - wonderful eyesight to see so clearly! Always hope things are going well for Far Guy - Chance what a gem you are!

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  16. You and Far Guy are such an example of fortitude. Know you'd rather not be, but you are. Thanks...

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  17. Oh, you're such a fashion icon!

    Glad to hear that Far Guy has found a good neurologist.. and isn't Chance just darling to take care of him!

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  18. Duct tape, plastic eye patch and flannel jammies! We want pictures!!! LOL :)

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  19. A good doctor, is like a really good teacher when you are in school. What they say, and how they treat you can have so much impact on your life forever.

    Glad to hear that he is a great doctor, you deserve someone that works with you, after all the difficulties.

    Good to know that things are progressing with the eye, and the shoulder, and yes, you would make quite the fashion statement.

    Jen

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  20. sleep walking!!! Oh no!
    glad to hear the eye is doing well.


    I had to see a neurologist recently. I didn't blog about it because I haven't wrapped my head around it.

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  21. I am so glad you have a good Dr. Our daughter is 'trying' to find someone who knows what is wrong with Linkin. For 42 years we've search to find someone to help Terry. A year ago in February we finally got the correct diagonses.
    It is good to know you are progressing with your eye and shoulder...progress is the best report out there besides..YOU ARE WELL!

    Linda
    http://coloradofarmlife.wordpress.com

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  22. I guess I don't have to say this but God must have put you two together. You take care of each other so well. Finding the right dose of meds much less the right meds from the right Dr. you must feel like things are on the way up. I am so happy for him, I have migraines and am on daily meds twice a day and can not imagine what he must suffer with.
    You have made me laugh so hard! Duct tape,red fuzzy sox, and thermal night gown plus and eye patch and on top of that your sleep walking!!
    Tie a rope to Far Guy's leg and when you get up it will wake him up and he can get you back in bed! You two are in my prayers.

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Thanks for stopping by! I appreciate your comments! If you have a question I will try to answer it here. Connie