i would let leeches hang out on my face if it rids you of pain. gotta do what ya gotta do lol!
Kc Dancer Kc said:
this is good! Would have put leaches on our face -- ewwwwwww
God has so carried me through this whole ordeal and i wouldn't go back to pre atn days because i would of never heard God's voice, literally! right before i went into surgery at north western memorial hospital in chicago. the gurney hesitated before we went into room and i prayed one last prayer. i said, "Lord be with me as i go through these doors" and in a strong still quiet voice he answered me, "I'm already in here" i smiled and almost wanted get up and run to Him inside of the O.R. the growing and refinement you receive by going through fires in your life are very hard but....you come out so more like God intended you to be. so do not despair, do not give up. do one day at a time it is all God asks of us and keep putting your self in His hands. He will not forsake you.
today eight years since diagx and five since that motor cortex surgery, although not a cure, i am on 2/3 rds less meds, can control pain better and have more function. i do not know why i have this but God will use it for His glory.
refined my our makers fire. you are right care takers need our love and support too. it is almost harder on them i think.
LyndaS said:
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
I was tentative about opening this forum since beside being "positive" it also seemed to be faith based. I was right. I am not christian, nor do I feel the slightist desire to be preached to on top of everything else. I thought the TN forums were safe places for us to discuss our medical conditions. Glad it works for you. Guess I need to take my heathen butt some place else before someone sends me to hell. Oh wait, we all know what that feels like eh?!
i have a visual when the pain is crazy. i picture our Lord Jesus and crawl into His arms and i always fall into a deep sleep shortly there after He is the only one that matters when all my attempts fail. <><
Cora said:
- 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
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. :)
On the heals of your words, Julie, someone said to me early on that, "God is trusting YOU with this. Sometimes we go through hard times for others, not just for our own growth." Many times I've come back to this statement to charge up my batteries. My friend who shared this always works to get me up on my next step! Gotta love real friends :-)
When we look for the good in ANY of our situations, good along with bad, we CAN find it, although it may elude us for a LONG time! When we find the good in the hard time, we can use it for our benefit. Until we find it, we have no foundation on which to stand. I found that in helping my family handle the fact that mom is not what she used to be, it helped me immensely. Holding out the opportunity for my family to smile even though it's hard, to Hope against Hope, and anchor right in the center of Hope, has been a saving grace deep within my soul. Now all they do is make fun of my painful face! LOL!
julie said:
God has so carried me through this whole ordeal and i wouldn't go back to pre atn days because i would of never heard God's voice, literally! right before i went into surgery at north western memorial hospital in chicago. the gurney hesitated before we went into room and i prayed one last prayer. i said, "Lord be with me as i go through these doors" and in a strong still quiet voice he answered me, "I'm already in here" i smiled and almost wanted get up and run to Him inside of the O.R. the growing and refinement you receive by going through fires in your life are very hard but....you come out so more like God intended you to be. so do not despair, do not give up. do one day at a time it is all God asks of us and keep putting your self in His hands. He will not forsake you.
today eight years since diagx and five since that motor cortex surgery, although not a cure, i am on 2/3 rds less meds, can control pain better and have more function. i do not know why i have this but God will use it for His glory.
when you talk to him acknowledge his pain watching you. men fix things and like my husband said yrs ago i feel like a failure because i can't help you. so care givers struggle too. is there some christian counsel you can seek? it helped me so much. they told us what to watch for and gave us suggestions how to deal with this pain condition and helped us over some rough spots. prayers for you two know that you are not alone .
sometimes when you cannot do something makes suggestions of what you can handle so he gets the idea you are trying. my husband said in small bible study group once when we were working on a marriage work book that "in sickness " part of vow was very hard to keep....i went gulp! but try to keep communicating.
blessings for pain free days.
Carol said:
The past year has been such a struggle for me. Being new to TN. Having to cancel plans with my husband because of the pain. At first he was so supportive. But as months went by I can see that it has become more of a burden to him. This pain has slowly come between us. I am not the woman that he married four years ago. This week I was so down and was feeling so empty and in pain. I began to search the web and God brought me to you guys. As I read the post, I began to weep tears of joy. I was not alone. Someone else in this world is fighting the same battle as I am. You guys are my blessing and I thank God for you all.
awesome!!!!!
Dana said:
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!!
i believe in the old saying, the squeeky wheel gets the grease, so whine away!!!! it is a form of communication and i don't look upon it as whining but venting. the unbelievable pressure of living with this disease and trying to live in the reality of the "normal" world gets really mixed up in your head with this condition. i always feel like i am on the outside looking in because this disease confines you in a weird way. we all look pretty good you can't see tn or atn like you would be able to see other diseases, but it is there in a big way.
i always tell people when they tell me i look good, i say, "thanks, but keep praying for me because i do really have struggles"
there has been sooo much support for me through here and daily strength and i have reaped such good information and ideas and things to try that now i want to help others when i see them first diagx because i don't want them to have to go through everything i did before i got help.
so whine/vent away we love you all!
Tara Cain said:
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.
i didn't take offense to you using the word whining in this respect because sometimes we all have to give ourselves pep talks. but don't be too hard on your self. when yo have this condition it is horrible and you are entitled to your days of being down you just can't stay there so fight girl fight!!! :)
Tara Cain said:
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.
@ravenm—
No preaching here, just people finding their way through a hell-acious demon (you said to right, we know what hell feels like!), that has invaded our physical beings. There is a group on here called "Your Happy Place"… Please join us. It's where people post pics of their "happy places" they go (or dream about going) so that they can walk through a flare up. If there is ANY way for you to find your way through the maze of pain, my hats off to you. I am still amazed at some of the strong souls here who find the good in their hard times and pass them on…and they aren't believers in Christ as their Savior. They send along pics of the beauty of our world, even in the smallest of things, like a tinee, weenee, little flower in bloom. Amazing strength comes even through photos, not just words of support and friendship.
We are here to offer you support, friendship and love in the highest order—acceptance. This is a HARD disorder to walk through in life, and we are all here to hug you through it. Please see the postings as a way to help our fellow TN soldiers…some of the strongest people I know (and would not trade for the world!).
Take Care, Sweetheart :-)
Sincerely,
LyndaS
ravenm said:
I was tentative about opening this forum since beside being "positive" it also seemed to be faith based. I was right. I am not christian, nor do I feel the slightist desire to be preached to on top of everything else. I thought the TN forums were safe places for us to discuss our medical conditions. Glad it works for you. Guess I need to take my heathen butt some place else before someone sends me to hell. Oh wait, we all know what that feels like eh?!
We never know why we go through what we go through. I think I will have a conversation or two with Jesus when we meet face to face. LOL. But I do know that all things work to the good of those who love God. He has shown me time and time again.
The first time I had my MVD I had such peace it was amazing. I was supposed to be in NICU for 2 days, in a regular room one and go home. I had my surgery, went into a regular room the next day and left that afternoon. While my husband was down getting a wheelchair and the car, a woman from housekeeping came in looking confused. She said I don't know why I am here. She was looking rather drained, so I told her to come in and sit down. We talked and I found out she was at the hospital late the night before because her sister was admitted to give birth to her niece. They both died that night in labor. The maid had to be back at work in the morning as she could not afford the time off. After we prayed and fellowshiped she walked out feeling much better. Just then, my husband comes in with the chair, he had a heck of a time finding one. LOL ! If I had to go through it all again, just to be there for that lady, I would do it. We never know, but He does. Trust Him, he sees things we don't.
Don't worry, Raven, your heathen butt is not alone! Although my sweet Momma did her best to raise her children to be good Christians, I guess it just didn't take with me. I respect the faith of others, all faiths, and I will defend your right to believe and say what you believe. In spite of being rejected by some of the most devout members of my own family. I'm not losing sleep over where I go when I die, I figure I will know folks in both places ;o)
ravenm said:
I was tentative about opening this forum since beside being "positive" it also seemed to be faith based. I was right. I am not christian, nor do I feel the slightist desire to be preached to on top of everything else. I thought the TN forums were safe places for us to discuss our medical conditions. Glad it works for you. Guess I need to take my heathen butt some place else before someone sends me to hell. Oh wait, we all know what that feels like eh?!
Well, I posted earlier and it did not go through on my I-phone. I agree with Heather. Why did Jesus tell us the story of the Good Samaritan, to let us know most people will not have compassion. If you have pain most days of your life and your doing all you can to get help, it wears on you. It’s like being in the boxing ring, down for the count without end. Years before my neuralgia, in my early thirties, I used say to my husband, that his friend who had severe spinal injuries was surely not that bad. He and his wife tried to hang with us, but he was miserably in pain. I’ve asked him and the Lord for forgiveness. My blessing is to be compassionate and non-judgementsl towards the sick, hurting, elderly, abandoned, left out, those at the end of their rope, people. I look for windows of opportunity to help an elderly person shop at the store or just the other day help a woman with MS, who looked fine, try on shoes and defend her as teenagers tried to scare her companion dog. I volunteer on prayer lines on the Internet as talking hurts. This is my blessing. The cup half full didn’t work for most in the bible that were beheaded, thrown to the lions, or crucified. This is an opportunity to cling to God for me and in the same way pray for healing for myself and others, " pray for one another so you may be healed." James 5 God forgive me if I ever use the word whiner. What if Jesus had not reached out to the woman with the issue of blood or had compassion on the thousands do those who followed Jesus everywhere? All those stories tell us to take our bikes of compassion and pedal, pedal, pedal to encourage others. Let’s face it, many neuralgia stricken, who have not found a remedy or surgery are needy, hurting, hanging on by the thread of the end of the rope to find a quality of life or some still have kids at home, like me. I need others when I am venting. I need compassion ( not pity, although Christ gives it all). Many that we hung with, even loved ones, cannot understand this disease, so we must carry one another. Thank you to all who encourage me. God bless all of you!
Every morning, I give thanks to God for giving me yet another in this roller-coaster ride called life. I consider myself blessed for having another with family and friends. My TN is only in the beginning stages and for that I am grateful. Sure there are times I need to talk about the pain I am feeling, but only because I am new to this an do not fully understand why I can handle pain just about anywhere else, but the the pain in my head. I feel blessed to belong to two support groups with other who know and understand what I am going through. I feel extremely blessed when I am able to help or comfort others especially those who have TN.
Do I like or enjoy TN? Oh heck no! But I am grateful to have the support and understanding of many wonderful people.
Dear Dear SReagan,
Thank you so much for this post! The few short moments that it took for me to read this precious post were indeed one of my little things today. We have another day filled with opportunities to enjoy His blessings and rely on His strength to move past the stinky stuff. Hugs, Sara
SReagin said:
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!
Thanks Sara! Although I am no longer battling the pain of TN, I am doing battle on another health front. Vertigo, confusion, unsteady walk. Some days are better than others. Today is a real bad one. So I needed and appreciate the hug. It is surely one of those gotta look for it days. Making my hubby take me to see Brave tonight! Maybe that will help :). Be blessed!
amen SReagin…
I heard something the other day:
'it will all be ok in the end. if things are not ok, then it’s not the end yet. 
i am a christian, so i have a very specific end in mind - and with that:HOPE which is what keeps me going.
Oh Yea, mrl, I love it!
I am blessed to have a gorgeous home (hoping I can keep it, but) and I am so happy here. I just bought it right before this happened, but I thank whatever karma led me here, its so peaceful. I am also thankful for my two gorgeous, loving and wacky dogs. If it wasnt for them I would be lost, they are my loves!!