You have been struggling for a long time. It’s not only the pain that wears you down but trying to hide it away is exhausting too.
I was stoic for a long time too and although people knew, only a few closest had some idea. Now it’s over the top and I couldn’t hide it from the mailman (even if I had such a thing!) if I wanted too. I live alone so in many ways, in the beginning, that served me. Now I am calling, “somebody come and get me!” Of course nobody is, so I found this group and it is the next best thing, or perhaps even the best thing, everyone here understands.
Are you being looked after by a specialist?
Bellalarke
beachwalkmm said:
I like the way you put that into perspective - it could be my new motto’ - LOL or our new "motto’
I enjoyed reading about you above, you have a very interesting background…and talents.
I sure wish there was an easy TN fix for us all.
I have been forced to work with it, missing a lot of work and the worry of loosing my job. Working while having bad TN days just amplifies the pain, but I know I can usually get through it if I have to…but it sucks.
Then I rush home to just have a quite dark place to hide and call my own.
I have turned down many vacations and fun functions…but try to do as much as I can even in pain.
I have a hard time functioning on all the meds they give me, so try to limit those as much as I can…or I can’t drive.
My symtoms are always with me since 2002, but at times amplify greatly…those are the hard times.
Not as bad as the first few years…but still with me. The past 2 weeks were bad ones, that is when I found this group in conitinued search of maybe something new.
Right now as beautful as the windchimes sound, I am going to have to go remove them for awhile…it is the vibration once again.
Hope you have a beautiful Spring…and don’t let TN take the spark out of you. Keep your spirit strong! Bellalarke said:
Yes, really…we never know how much the world vibrates until it literally gets on our nerves!
The hospital is really close to home so the ride home went fine. I went straight to bed and I’m cuddled up with my pups. My neuro is fired though. He refused to see me in the hospital! WTF?!? He wouldn’t respond to my calls or texts for three days and finally his assistant called back and said “he’s CHOSEN not to see any patients in any hospital.” He admitted end me not that long ago for 5 days for my migraines and he saw me there. That was at the hospital next door. He is affiliated with the hospital I was at though and is even listed on their website! Oh make that 4 overnights!
Anyway, this is a positive post, so I’m going to end it with looking forward Tobin hospital food and the Project Runway finale tonight. AND sleeping snuggled up with my puppies.
WTF indeed. Is that the guy who “roughed” up your nerve? Maybe he’s running scared…
Oh the delights of reality TV. I have succumbed this winter and have watched American Idol for the first time. Well, sort of, it’s pretty flashy and loud. But I love The Voice! Haven’t tried Project Runway. Enjoy. Glad you’re home.
This is not the guy who operated on me. He’s done seeing me because I’m more than 6 weeks out and not technically have surgical complications. He’s just a surgeon. I have a separate neurologist who is supposed to manage my migraines and tn. His answer for my tn getting worse has just been take more neurontin! As much as you want! The surgeon sent me to a pain management doctor that gave me dilaudid pills to take every morning but won’t manage my other tn meds. The dilaudid he gave me keeps the ER from wanting to give me anymore pain medication because I’m already on the pain meds. So they have to admit me. It’s such a run around. I got a new appointment with a new beyrogist that I’ve heard good things about. I saw a neurologist down in Houston when I saw my new surgeon who is doing the gamma knife and she is awesome, but I need someone close by as well. She’s too far for everyday stuff and crisis situations like the past few days. This new guy I made an appointment with sees patients in the hospital (we asked lol) and also does rotations in the emergency room there anyway. That sounds like a much better situation to me.
I used to be much more I to American idol but I think it’s starting to peter out. I’m enjoying the voice more now. I think they show too much if Carson Daly, although it seems like they’ve cut him back some this year. Project Runway is my favorite I think. I caught the tail end of a show called Face Off when I got home today. It’s a contest reality show with movie make up artists and apparently runs on ScyFy normally. They were playing it on Bravo when I got home and I was FASCINATED!! I’m a sucker for reality TV. I’ve stopped trying to hide it. Even us intellectuals have our guilty pleasures lol
Very strange, I had sort of the reverse experience. I has a consultation with a Neuro across the street from the main hospital, technically his private practice but he has privileges at the hospital. Nurse knocks on the door and said there was an emergency at the hospital and they wanted a quick advice from him. While I did not care for this particular doctor overall, I did not really mind him leaving for 10 minutes for an emergency. No idea why you’re Neuro couldn’t take 10 minutes at least to talk to you or your doctors and get the meds straightened out, even via phone.
Exactly. To not respond to me or my mother is unethical in my eyes. He could have at least called one of us and said “I don’t see patients at the hospital but I will call them and make sure you’re taken care of”. That takes less than 5 minutes. I want to make a follow up appointment, as his adsistant suggested i do, just so I can tell him he’s fired Donald Trump style (pointing finger and all!)
I agree, it’s just inhumane to not respond for three days to an emergency case.
It gets so complicated with all the docs. Super you really like the new one who’s going to do the gamma knife. But I know what you mean about needing someone closer. I need one closer too and am looking into that.
Oh I don’t get Bravo. Maybe I should add it. I’m a big HBO fan but not into the series on just now. Bill Mahr’s Realtime keeps me up with American politics (what a sleazy way for me to get the news but he makes it fun and has great guests on, otherwise I would never be able to understand what goes on down there or who the personalities are…it’s such a personality driven world these days.) Yes, guilty pleasures.
And in keeping with the post, I look forward to simply being able to sing along again with my favourite recording artists. Just watching others is the pits…
A rollercoaster of a ride. I always hope and look forward to the good times...and manage to get through the bad days
I have an internal specialist that understands my TN and gets me my accupuncture referals etc. but I do see a neurologist also. I have gone through several. It seems like they are so easy to say, there is nothing they can do, besides try different meds and I have tried many,
I opt for pain control as long as I can...then at times it flares up so badly I have to get on something.
I am due to go back for a visit. I keep thinking each year there might be something new or discovered, but not the case.
I don't have compression so surgery is not an option, nor is gamma.
Just have to hang in there like we all do.
Right now my husband is rocking in his recliner chair and the small clicking is giving me nerve shocks...and every tooth on the left side feels like they just got pulled out.
It is always something...stupid TN!
Bellalarke said:
Hi Mary Anne
You have been struggling for a long time. It's not only the pain that wears you down but trying to hide it away is exhausting too.
I was stoic for a long time too and although people knew, only a few closest had some idea. Now it's over the top and I couldn't hide it from the mailman (even if I had such a thing!) if I wanted too. I live alone so in many ways, in the beginning, that served me. Now I am calling, "somebody come and get me!" Of course nobody is, so I found this group and it is the next best thing, or perhaps even the best thing, everyone here understands.
Are you being looked after by a specialist?
Bellalarke
beachwalkmm said:
I like the way you put that into perspective - it could be my new motto' - LOL or our new "motto' ;)
I enjoyed reading about you above, you have a very interesting background...and talents.
I sure wish there was an easy TN fix for us all.
I have been forced to work with it, missing a lot of work and the worry of loosing my job. Working while having bad TN days just amplifies the pain, but I know I can usually get through it if I have to..but it sucks.
Then I rush home to just have a quite dark place to hide and call my own.
I have turned down many vacations and fun functions....but try to do as much as I can even in pain.
I have a hard time functioning on all the meds they give me, so try to limit those as much as I can....or I can't drive.
My symtoms are always with me since 2002, but at times amplify greatly...those are the hard times.
Not as bad as the first few years....but still with me. The past 2 weeks were bad ones, that is when I found this group in conitinued search of maybe something new.
Right now as beautful as the windchimes sound, I am going to have to go remove them for awhile...it is the vibration once again.
Hope you have a beautiful Spring....and don't let TN take the spark out of you. Keep your spirit strong! Bellalarke said:
Yes, really...we never know how much the world vibrates until it literally gets on our nerves!
It’s terrible but I sort of laughed, you know, in the recognition way, Not at your pain, yikes! at the squeaking rocker. It’s certain pitches and frequencies, so innocent but there is nothing much you can do when your nervous system picks up on something. Also too bad you have to ditch the wind chimes.
I’m always stepping on the gas when I drive because the whine of third gear is almost unbearable…
And just about my very worst - something most people don’t have to worry about - chain saws. But here in the forest it seems someone is always firing one up. I know the sound of the local faller’s truck and just cringe when I hear it coming into my neighbourhood.
I’m glad you’ve got a good internist. At least someone who gets the disease.
I am looking for a good acupuncturist nearby. I do go for shiatsu massage when I have a few bucks, which works on similar principles. It can make the difference between a tolerable week and an unbearable week…sometimes.
Have you told your husband about the squeak? />
beachwalkmm said:
Hi,
Yes it has been a long time.
A rollercoaster of a ride. I always hope and look forward to the good times…and manage to get through the bad days
I have an internal specialist that understands my TN and gets me my accupuncture referals etc. but I do see a neurologist also. I have gone through several. It seems like they are so easy to say, there is nothing they can do, besides try different meds and I have tried many,
I opt for pain control as long as I can…then at times it flares up so badly I have to get on something.
I am due to go back for a visit. I keep thinking each year there might be something new or discovered, but not the case.
I don’t have compression so surgery is not an option, nor is gamma.
Just have to hang in there like we all do.
Right now my husband is rocking in his recliner chair and the small clicking is giving me nerve shocks…and every tooth on the left side feels like they just got pulled out.
It is always something…stupid TN!
Bellalarke said:
Hi Mary Anne
You have been struggling for a long time. It’s not only the pain that wears you down but trying to hide it away is exhausting too.
I was stoic for a long time too and although people knew, only a few closest had some idea. Now it’s over the top and I couldn’t hide it from the mailman (even if I had such a thing!) if I wanted too. I live alone so in many ways, in the beginning, that served me. Now I am calling, “somebody come and get me!” Of course nobody is, so I found this group and it is the next best thing, or perhaps even the best thing, everyone here understands.
Are you being looked after by a specialist?
Bellalarke
beachwalkmm said:
I like the way you put that into perspective - it could be my new motto’ - LOL or our new "motto’
I enjoyed reading about you above, you have a very interesting background…and talents.
I sure wish there was an easy TN fix for us all.
I have been forced to work with it, missing a lot of work and the worry of loosing my job. Working while having bad TN days just amplifies the pain, but I know I can usually get through it if I have to…but it sucks.
Then I rush home to just have a quite dark place to hide and call my own.
I have turned down many vacations and fun functions…but try to do as much as I can even in pain.
I have a hard time functioning on all the meds they give me, so try to limit those as much as I can…or I can’t drive.
My symtoms are always with me since 2002, but at times amplify greatly…those are the hard times.
Not as bad as the first few years…but still with me. The past 2 weeks were bad ones, that is when I found this group in conitinued search of maybe something new.
Right now as beautful as the windchimes sound, I am going to have to go remove them for awhile…it is the vibration once again.
Hope you have a beautiful Spring…and don’t let TN take the spark out of you. Keep your spirit strong! Bellalarke said:
Yes, really…we never know how much the world vibrates until it literally gets on our nerves!
It's terrible but I sort of laughed, you know, in the recognition way, Not at your pain, yikes! at the squeaking rocker. It's certain pitches and frequencies, so innocent but there is nothing much you can do when your nervous system picks up on something. Also too bad you have to ditch the wind chimes. I'm always stepping on the gas when I drive because the whine of third gear is almost unbearable... And just about my very worst - something most people don't have to worry about - chain saws. But here in the forest it seems someone is always firing one up. I know the sound of the local faller's truck and just cringe when I hear it coming into my neighbourhood.
I'm glad you've got a good internist. At least someone who gets the disease.
I am looking for a good acupuncturist nearby. I do go for shiatsu massage when I have a few bucks, which works on similar principles. It can make the difference between a tolerable week and an unbearable week...sometimes.
Have you told your husband about the squeak? />
beachwalkmm said:
Hi,
Yes it has been a long time.
A rollercoaster of a ride. I always hope and look forward to the good times...and manage to get through the bad days
I have an internal specialist that understands my TN and gets me my accupuncture referals etc. but I do see a neurologist also. I have gone through several. It seems like they are so easy to say, there is nothing they can do, besides try different meds and I have tried many,
I opt for pain control as long as I can...then at times it flares up so badly I have to get on something.
I am due to go back for a visit. I keep thinking each year there might be something new or discovered, but not the case.
I don't have compression so surgery is not an option, nor is gamma.
Just have to hang in there like we all do.
Right now my husband is rocking in his recliner chair and the small clicking is giving me nerve shocks...and every tooth on the left side feels like they just got pulled out.
It is always something...stupid TN!
Bellalarke said:
Hi Mary Anne
You have been struggling for a long time. It's not only the pain that wears you down but trying to hide it away is exhausting too.
I was stoic for a long time too and although people knew, only a few closest had some idea. Now it's over the top and I couldn't hide it from the mailman (even if I had such a thing!) if I wanted too. I live alone so in many ways, in the beginning, that served me. Now I am calling, "somebody come and get me!" Of course nobody is, so I found this group and it is the next best thing, or perhaps even the best thing, everyone here understands.
Are you being looked after by a specialist?
Bellalarke
beachwalkmm said:
I like the way you put that into perspective - it could be my new motto' - LOL or our new "motto' ;)
I enjoyed reading about you above, you have a very interesting background...and talents.
I sure wish there was an easy TN fix for us all.
I have been forced to work with it, missing a lot of work and the worry of loosing my job. Working while having bad TN days just amplifies the pain, but I know I can usually get through it if I have to..but it sucks.
Then I rush home to just have a quite dark place to hide and call my own.
I have turned down many vacations and fun functions....but try to do as much as I can even in pain.
I have a hard time functioning on all the meds they give me, so try to limit those as much as I can....or I can't drive.
My symtoms are always with me since 2002, but at times amplify greatly...those are the hard times.
Not as bad as the first few years....but still with me. The past 2 weeks were bad ones, that is when I found this group in conitinued search of maybe something new.
Right now as beautful as the windchimes sound, I am going to have to go remove them for awhile...it is the vibration once again.
Hope you have a beautiful Spring....and don't let TN take the spark out of you. Keep your spirit strong! Bellalarke said:
Yes, really...we never know how much the world vibrates until it literally gets on our nerves!
No problem laughing....at the little noises that bother us when having a TN moment.. We have to laugh or it would drive us crazy! Fun to hear the other things that bothers. I have never talked to anybody about this same situation before...like my friends or family, they just give me the look. Like that too?
The rocker chair squeek is a new one...the chair just started doing it. He will have to fix it, or move it or get another one. It is really bad. My husband is very caring and helpful when I say something bothers me.
Off to make dinner
Thanks for the nice replies and understanding.
beachwalkmm said:
Hi,
Yes it has been a long time.
A rollercoaster of a ride. I always hope and look forward to the good times...and manage to get through the bad days
I have an internal specialist that understands my TN and gets me my accupuncture referals etc. but I do see a neurologist also. I have gone through several. It seems like they are so easy to say, there is nothing they can do, besides try different meds and I have tried many,
I opt for pain control as long as I can...then at times it flares up so badly I have to get on something.
I am due to go back for a visit. I keep thinking each year there might be something new or discovered, but not the case.
I don't have compression so surgery is not an option, nor is gamma.
Just have to hang in there like we all do.
Right now my husband is rocking in his recliner chair and the small clicking is giving me nerve shocks...and every tooth on the left side feels like they just got pulled out.
It is always something...stupid TN!
Bellalarke said:
Hi Mary Anne
You have been struggling for a long time. It's not only the pain that wears you down but trying to hide it away is exhausting too.
I was stoic for a long time too and although people knew, only a few closest had some idea. Now it's over the top and I couldn't hide it from the mailman (even if I had such a thing!) if I wanted too. I live alone so in many ways, in the beginning, that served me. Now I am calling, "somebody come and get me!" Of course nobody is, so I found this group and it is the next best thing, or perhaps even the best thing, everyone here understands.
Are you being looked after by a specialist?
Bellalarke
beachwalkmm said:
I like the way you put that into perspective - it could be my new motto' - LOL or our new "motto' ;)
I enjoyed reading about you above, you have a very interesting background...and talents.
I sure wish there was an easy TN fix for us all.
I have been forced to work with it, missing a lot of work and the worry of loosing my job. Working while having bad TN days just amplifies the pain, but I know I can usually get through it if I have to..but it sucks.
Then I rush home to just have a quite dark place to hide and call my own.
I have turned down many vacations and fun functions....but try to do as much as I can even in pain.
I have a hard time functioning on all the meds they give me, so try to limit those as much as I can....or I can't drive.
My symtoms are always with me since 2002, but at times amplify greatly...those are the hard times.
Not as bad as the first few years....but still with me. The past 2 weeks were bad ones, that is when I found this group in conitinued search of maybe something new.
Right now as beautful as the windchimes sound, I am going to have to go remove them for awhile...it is the vibration once again.
Hope you have a beautiful Spring....and don't let TN take the spark out of you. Keep your spirit strong! Bellalarke said:
Yes, really...we never know how much the world vibrates until it literally gets on our nerves!
Omg there was a clock ticking sooooo loudly in my hospital room driving me MAD! I didn’t even turn on the TV for 3 days (unheard of!) because all noise was too much for me. I barely opened my eyes for at least two of the three days. My dad is really tall at 6’6" so he offered to pull the clock off the wall and take the batteries out for me but I was worried maybe the nurses needed the clock to look at for some reason. None of the nurses could even hear the clock apparently! It is amazing how heightened our senses become in those situations.
I’ve slept with a ceiling fan on for as long as I can remember, much to the dismay of many a boyfriend. I’ve driven every person I’ve ever known with contacts insane by keeping ceiling fans going in every room in my house at the same time. Suddenly I can’t stand even that on my face!!! I don’t know what I am going to do to stay cool! I get super hot when I slee on my own and I have two dogs in bed with me, and the hottest one if them sleeps under the covers all night! If I kick the temp on the ac down even one degree and my mom is texting me from downstairs that she is freezing. When I lived alone I would never have had a problem. This is getting ridiculous. Bed warmers may they be, my pups have been dying for me to get in bed for the past two hours so normal sleeping patterns can resume lol. My parents said they both slept up in my bed without me while I was in the hospital and that they were clearly unhappy I was gone. Even if I did miss the boat on love and marriage and babies because if my new complicated life, I will always have my dogs to fill my heart with joy. I don’t know why, maybe it’s all the pain meds, or laying alone in a hospital bed for most of three days (ok my parents did visit but still) I’ve been really sappy about this lately. My life may not have been perfect before but I was skinny and pain free! Lol Maybe not the most important things in life, but seriously help out in the finding a mate department, and right now they are looking like things of the past. I don’t think watching Bravo’s Top Ten Weddings is helping lol who put this trash on?!? I swear it was one of the dogs!!!
Oh gosh, don’t watch Top Ten Weddings right now, Heather. Watch the weather, anything but that. And you haven’t missed the whole family boat yet, you’ve still got time. Just think of the beginning of this post and how you vowed to never be down on people because of their weight or whatever. Now you have a much deepened perspective of what it means to be human and so when you are better, you will attract and meet someone with a similar kind of depth, and then what a great relationship you will have. It won’t hinge on being skinny or anything like that, (even when you are skinny again).
In the meantime you have the dogs and that is such an intense scene you paint of the one who sleeps under the covers and your mother downstairs texting you and the fans and the clock and the AC. I hope you sleep well.
I told Bellalarke I would post this image here because I couldn’t figure out how to send it through the messaging system. She shared a beautiful piece of her artwork, so I thought it would be worth a smile to post this image. The piece is titled “Snow Zebra” and I won a statewide art competition with it when I was in kindergarten. The assignment given by the teacher was to paint something with a motor. While everyone else painted cars, trucks, and planes, I painted this. My was that its heart was its motor. I have always been trouble 351-image.jpg (1.71 MB)
I think that's actually genius outside the box thinking, especially for a Kindergartener. In a way that zebra's heart (whether physical or spiritual), is more a marvel of engineering than any modern mechanical motor.....
HCal said:
I told Bellalarke I would post this image here because I couldn't figure out how to send it through the messaging system. She shared a beautiful piece of her artwork, so I thought it would be worth a smile to post this image. The piece is titled "Snow Zebra" and I won a statewide art competition with it when I was in kindergarten. The assignment given by the teacher was to paint something with a motor. While everyone else painted cars, trucks, and planes, I painted this. My was that its heart was its motor. I have always been trouble
Here is my contribution, painted it this winter. My first attempted at paining since probably 6th grade as I never was the artist type. I went to the art museum here and got inspired. As you can tell probably spent too much time in the impressionist section 0:-). Color are a bit bright and overal it looks like a kid did it, but it was rather therapeutic.
To relate back to the topic, it was our campsite along the Allegheny Reservoir in NW Pennsylvania. Hike 7 miles with a pack to get there. Did it this past year with the facial pain and all, but in a way backpacking/ Hiking tends to overload the senses which eases the pain a bit for me. Would love to do this again someday, without the facey pain....
That’s actually really beautiful I think! I tried to paint with oil paints over a decade ago and it was such an epic fail I haven’t tried again. I watched too much Bob Ross and thought it would be really easy to make “a pretty little tree live over here” or “maybe a nice barn can live right over here.” It did not happen that way for me lol. I’ve bought canvases and paint recently but I think I’m afraid to mess them up now. Maybe on all these drugs I can paint something more free and awesome!
Hey JoeE, you can never spend too much time looking at Impressionist painting! Its wonderful to get inspired. I really like your painting. Good colour sense and nice brushwork. To make something satisfying goes way beyond “therapeutic”, I think, it takes you to another realm.
I love going to big museums and galleries.
Are you going to make more paintings? Looks like you still got some paint left…
