I did mine in the posting below!
How about you?
So very thankful I live In the present day. Can you imagine having TN in the 1800’s or 1500’s ? Very thankful for the Internet and this group, it is beyond words to see other people express the same emotions and difficulties that I face.
My new favorite quote: ‘Our life is always all right. There is nothing wrong with it. Even if we have horrendous problems, it’s still just our life.’. C. Joko Beck— So stop the mental suffering of whining about it because it ain’t helping…
this is good! Would have put leaches on our face -- ewwwwwww
I always think ''there is always someone worse off". I am ever so grateful there is tegretol.I work with oldies with alzheimers and often think how bad it would be to be in pain and not be able to express yourself.How would anyone know...
Yes, I work in hospice -- hard to bitch about too much in my life!
My positive is LwTN, a lifeline for so many and a wonderful conduit for understanding friendship. I would not have met you guys if it were not for TN!!
I am actually finally responding to my meds and feeling somewhat “normal”. The first hour taking tegretol is often fussy but I do level out. Pain is now tolerable. I am going back to working out and doing sport activity. I do though at times have my moments of being depressed but I say I’m thankful being on the right side of the grass!
I feel so fortunate - I am having the baloon decompression today and am praying that it works. My neurosurgeon has been very successful and has not ever had anyone return for a redo and has only had one person it did not work on and he truly believes that he had some other kind of condition other than TN. I am very excited and will post my success (hopefully)
Good luck to you!!
I am grateful for trigeminal neuralgia (TN) and the other pains I experience (mainly arthritic and migraine) which have taught me the invaluable lesson of slowing down, getting off the gravy train, as it were, reassessing why I am here and what life is all about.
Without these severe and ongoing 'intrusions' into my life, I would still be chasing empty dreams without knowing why or where I was going. Rather than experiencing and exploring my pain, I would be suffering desperately and collapsing under its weight . Instead of being able to observe from the outside without the distractions of 'work', 'commitments' and 'duties', I would still trapped in the matrix of 'convention', unable to see clearly let alone find a way out. Without the pain, I would not have found the strength and commitment to search for holistic healing within.
TN and other pains have released me from the bonds of conventionality into a wonderful, painful yet fulfilling evolution where spiritual and emotional growth are just as valued, if not more so, than physical and mental growth.
Because of the blessings of neuralgia and rheumatoid arthritis, I feel more whole, focused and on the right path. I appreciate that it is often difficult to change the suffering mindset at first, but I hope, one day, we can all find the abundant blessings within our pain.
Blessings, patience and peace x
I don't think you can do much better than this ancient Sanskrit proverb ... 'Look To This Day'
Look to this day for it is life
the very life of life.
In its brief course lie all
the realities and verities of existence
the bliss of growth
the splendour of action
the glory of power.
For yesterday is but a dream
and tomorrow is only a vision
but today, well-lived makes
every yesterday a dream of happiness
and every tomorrow a vision of hope.
Look well, therefore, to this day.
Good Luck everyone!
There is beauty and blessing in each new day. You can see it, but sometimes you have to look more than just glance. The sweet smile of a child, your pet welcoming you home at the end of the day, a good piece of chocolate :), a kind word. Just some of the little things that have helped me along the way. And always, always I know that my precious Jesus is right there beside me. I choose joy, because the alternative stinks!
I read and agree with the posts above. I am go grateful for all of the people on here that are willing to open up and share the good as well as the bad. Is it whining? No, not in my book. It's reminding me that someone else is going through a rough patch and needs to vent because too many families will not understand. When that happens the rest of us that are having good times need to commiserate with the unfortunate person. Many of us have break throughs, but we know that we are not alone. And this board helps me learn to be thankful for the things that are good in my life. Most of my health, my family, a sweet smile from someone. All of these are uplifters. And best of all I can talk about my Jesus and not be criticized for it.
I am very thankful for this TN list where I learn so much.
God's Blessings on all of you.
No you are totally correct. I wasn't very specific. The whining part was totally my conversation to myself. I need to stop bemoaning that my TN has returned "TOO SOON" following my MVD and start dealing with the things I can.
I would hate for someone to feel they couldn't express themselves because of my remarks. Thanks!
Heather said:
I'm with you Jackie! But Tara, I have to disagree with you saying to stop the whining. This is supposed to be our safe place, where we are among friends;others of our kind, OUR PEOPLE. I would hate for someone to read that and feel like they can't share how they are feeling. Nobody is positive 100% of the time. Sometimes we get overwhelmed, especially when we are in pain. I think most of us experience enough lack of empathy in our lives, we shouldn't have to face that here. I hope I don't sound harsh, that isn't my intention at all. Just felt the need to express my thoughts.
This forum is a huge blessing! I felt like a freak until I found it. It has been a great place for information and just to understand one is not alone. Another blessing a combo of meds that finally works well…still have to watch the diet though. : ) Recently discovered turmeric capsules and they are a great natural anti inflammatory. By the way Cora,I am with you…faith is another blessing!
I saw your positive and thought I would check it out - I'm doing great I had an mvd 7 months ago and doing great. I do stay away from message boards because I don't want to hear of folks whose mvd didn't work because it causes fear and fear is the worst enemy. I am so thankful everyday that I can eat and blow my nose and every pain can now be fixed with an ibprophin! I'm going camping this weekend. When I read the one little statement of the bad here I realized I was wrong to check back in. once you have no pain you need to stay away from message boards and just live life - a month ago Iwas flipping channels and 700 club has news and so I watched the story at the end of the program Robertson mentions healings for people during prayer and this day the only day I had turned this show on he mentions Tic Deleroux ( TN) and place your hand on your face and know you are healed as he prayed. If it works or not the odd of him saying this the odds of me tuning in. All I could say was WOW really? I'm claiming that healing !!! A positive attitude is great medicine! Thanks for starting this -I wish you all great days!!
Dana, God has not given us a spirit of fear but of love, power and sound mind. Scripture also says we are to be encouragers. Even though I have had an unsuccessful first MVD, my second was successful because they clipped the nerve. However it also gave me hydrocephalus and I have a VP shunt as a result. All of us struggle with one thing or another. But it is so encouraging to know that we are not in the boat alone and that Jesus does still heal. Sometimes just not the way our finite minds can handle. Please keep checking in, it helps you to know you aren't alone, and it helps others to strengthen their faith. The added bonus is that there might be some folks who check in that don't have faith and need to know your Jesus. :)
- You are so very right that others need to know my Jesus. When we are in such severe pain we don't know where to turn some people may need to know that it's my Jesus that carries me through. None of us has asked for this calamity, but there is a reason for it and I just praise Him because He allows me to go through this so I know where my Help is.
- WHen family doesn't want to go through this with us it is very hurtful. But God is there waiting for us to call upon Him. He does hear us.
- Thank you.
- Reply by SReagin 40 minutes ago
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Dana, God has not given us a spirit of fear but of love, power and sound mind. Scripture also says we are to be encouragers. Even though I have had an unsuccessful first MVD, my second was successful because they clipped the nerve. However it also gave me hydrocephalus and I have a VP shunt as a result. All of us struggle with one thing or another. But it is so encouraging to know that we are not in the boat alone and that Jesus does still heal. Sometimes just not the way our finite minds can handle. Please keep checking in, it helps you to know you aren't alone, and it helps others to strengthen their faith. The added bonus is that there might be some folks who check in that don't have faith and need to know your Jesus. :)
Good point, we are very fortunate to live with this disease in this day and time. Even 40-50 years ago, things were very different. I am grateful for this site for many reasons. Not only a source for understanding and support, but I hope the information gathered here will be seen by physicians and researchers who may find better ways to treat us. I had MVD surgery 2 years ago, it helped for a few months but then the pain came back. When it is really bad, I remind myself that it is "just" pain... I will not die, and it will stop... eventually. I am VERY grateful that this is not a constant pain.
I also agree with Heather 100%. Please, don't stop "whining" here... I need to read your stories and descriptions of your challenges so that I know I'm not alone with some of these crazy symptoms! I hate it when I'm told it is "all in my head" when I can't stand being in a room with an air conditioner (or evaporative cooler), or that altitude can affect pain and a host of other issues that we KNOW can make us feel worse!
I think I am more fortunate than most, as I don't have to work (although I wish I could). I spend most of my time alone with my beloved animals on a 20 acre remote ranch which is 100% off-grid (solar-wind electricity). Most people would hate living like this, but I love the peace, quiet, clean air and the wonders of nature. Best of all, the equines, goats, chickens, dogs and cats don't care if I don't feel like talking! They help me so much by lowering my stress.
Although I hate TN, it has probably made me a better person. I am much more patient with people because now I realize someone can look "fine" but might be suffering tremendous pain. I try to treat people with the same compassion I wish they would extend to me
Awesome thread here! So encouraged by your words, everyone :-)
@ Carol—I am on the 10th yr of this unwelcome TN visitor, and 21 years of marriage. At the onset of this experience, my youngest was 2, middle child, 3, and finally, my oldest was 9. My husband and I were working in my home business and it was thriving. He searched the internet, ordered books, helps, etc. and realized that this was not going away (even though I still disagree with him! :-). He had to work through his disappointment and over time learned not to take it out on me or the kids. He went out and was hired for a better job and my business was not needed to meet our daily needs. He stepped up to the plate and became a man's man through all of this fire. My children are better off BECAUSE of this as well. It was really hard to see back in the first few years of the disorder, but time began to play out and it's worked out to make our marriage, family and my business better because of the forced growth. Remember, Carol, LOVE always wins…our hubbies (and kids) need love and respect to grow through this, just like we do.
Blessings to you!
LyndaS