http://www.caringbridge.org/visit/albee/journal
Read if you care to follow along my journey through recovery and its various struggles esp this darn remission business, wow that’s a tough pill for me to swallow…
Thank you for writing that. I will be following you on Caring Bridge now. I think I have PTSD from TN also. Every little tingle puts me on edge, just waiting for a full-blown attack. I try to keep pushing through it and so far it has worked, but I worry about having a breakdown one day from holding it in too much. I was also kindly reminded that there is no cure for TN. :-( I keep hoping that when I go to the neuro tomorrow, that we can possibly get down to the bottom of WHY I have it so maybe we can FIX it. Mine has not gotten to the point of needing surgery yet and I pray it never does. Good luck and (((((HUGS))))
Albee, thanks for writing, know that you really are helping others (like me) who are waiting for MVD. It helps to read your honest writing about the physical and mental/emotional challenges post-op.So I personally thank you.
You know the saying “Life is short, live each day, make each moment count?” etc etc
Well, those words have never been truer for me in this constant state of intense pain .
Although we all know the cause and cure for TN remains a mystery, that does not mean we should feel defeated before we even start to heal after having a remission or a successful procedure that relieves us of this pain for however long.
Currently, I’m not “living each day” I’m surviving each day.
I’m not making moments count, because there are no moments.
If anyone who knew me read those comments , they’d never believe I wrote them.
BUT, this is what constant intense pain does to a person, even the most optimistic as myself.
All that being said, PTSD is the same.
Each day we must TRY our best, our mind is a powerful tool, positive thinking …
We NEED to tuck away in the far recesses of our brain the facts of TN, close the lid on that box, and tuck it away on a shelf.
I use a mantra, that goes something like this …" one day I will be pain free, I will be on only a small amount of meds, I will never ever have to endure this pain again. Life will BE again."
I then make a mental list of all the things I will be able to do…this gives me HOPE.
And on the very few “good days” I remember to make each moment count …
(((hugs))) continued restful recovery Albee, you’re on your way… Mimi
What is your "intense physical rehab" consist of?
Have you tried adding natural melatonin to aid with sleep?
Enjoy the football game!
Good luck Donna, please message me and keep me posted
Donna Cook Turnage said:
Thank you for writing that. I will be following you on Caring Bridge now. I think I have PTSD from TN also. Every little tingle puts me on edge, just waiting for a full-blown attack. I try to keep pushing through it and so far it has worked, but I worry about having a breakdown one day from holding it in too much. I was also kindly reminded that there is no cure for TN. :-( I keep hoping that when I go to the neuro tomorrow, that we can possibly get down to the bottom of WHY I have it so maybe we can FIX it. Mine has not gotten to the point of needing surgery yet and I pray it never does. Good luck and (((((HUGS))))
Hey KC - my future role model!!! Someone who sticks around to help others :)
Ive been dizzy for 17 months and very unsteady (fall risk) since the surgery. today is 3 weeks and even though cleared to drink (1 or 2) and drive if I skip any pain meds I just dont feel steady enough. They are putting together a program with a goal of getting me well enough to be on the driving range by mid-March but without any falling down :)
Kc Dancer Kc said:
What is your "intense physical rehab" consist of?
Have you tried adding natural melatonin to aid with sleep?
Enjoy the football game!
I will definitely keep you posted. Thanks!
OK - just make sure and set the beer down BEFORE you fall down! LOLOL
Albee said:
Hey KC - my future role model!!! Someone who sticks around to help others :)
Ive been dizzy for 17 months and very unsteady (fall risk) since the surgery. today is 3 weeks and even though cleared to drink (1 or 2) and drive if I skip any pain meds I just dont feel steady enough. They are putting together a program with a goal of getting me well enough to be on the driving range by mid-March but without any falling down :)
Kc Dancer Kc said:What is your "intense physical rehab" consist of?
Have you tried adding natural melatonin to aid with sleep?
Enjoy the football game!