Wednesday, April 30, 2008
Found a forum
I have joined http://www.menieres.org/forum. The people have been very nice. It is a relief to have someone to talk to. I think I have burned out everyone else. Hopefully even more people will find my blog too. Its good to know other people are going through this. I have been in such a state of crisis for months. I really thought I was just going to FREAK OUT! Now I feel better.
Not dizzy...still
Well--I am still not dizzy. So I am concluding that the first gentamicin injection will not affect me before I go back for more on Friday. I am letting my guard down a little because I know I just have to get through another day before I am back in his office. So I have had four and a half good days.
What a blessing! Every freaking second that I don't have vertigo is astonishingly wonderful. I can have confidence about normal things like walking across a room. One day last week I was in an IHop and wanted to go to the ladies room. But it was way across the room. Dean had walked me into the restaurant by holding my hand and balancing me. But I just could not ask him to walk me to the ladies room in front of a bunch of lunchers. So I had to wait. Now that is just not acceptable.
I have slowly been able to focus on more of my duties at home and at work. Its good to know that if I start a project I will be able to finish it. A sustained Meniere's attack truly stops you in your tracks. Nothing gets done, and you don't care because it is more important that the world stops spinning before your eyes than to put a dish away for example. And there is no point to putting something in the oven if you don't know if you will be able to take it out again--without falling in!
What a blessing! Every freaking second that I don't have vertigo is astonishingly wonderful. I can have confidence about normal things like walking across a room. One day last week I was in an IHop and wanted to go to the ladies room. But it was way across the room. Dean had walked me into the restaurant by holding my hand and balancing me. But I just could not ask him to walk me to the ladies room in front of a bunch of lunchers. So I had to wait. Now that is just not acceptable.
I have slowly been able to focus on more of my duties at home and at work. Its good to know that if I start a project I will be able to finish it. A sustained Meniere's attack truly stops you in your tracks. Nothing gets done, and you don't care because it is more important that the world stops spinning before your eyes than to put a dish away for example. And there is no point to putting something in the oven if you don't know if you will be able to take it out again--without falling in!
Tuesday, April 29, 2008
When will the dizziness strike?
No reaction from the gentamicin...yet. I feel like I am waiting for a bomb to go off. But I guess I may not be dizzy with just the first injection. It may take several.
So is it working? I have no idea.
Its also hard to explain to people who ask me how I am. I say I'm not dizzy. They say that's good. Then I say no its bad. I am supposed to get dizzy so I will know the gentamicin is working. They just look at me like I am standing on my head. I shouldn't have told anyone I was getting them.
Other than feeling like I am waiting for the moment of doom, I am ok. I have not wanted to do much wedding planning though. Once I calm down about the Meniere's, I will get back to work in earnest. As far as I know, most of the big stuff is all set up. I have to decide on exactly what is happening during the ceremony. And what music will be played. We are having problem getting a live person to sing or play on the holiday weekend. So we will probably have recorded music during the ceremony. That is not great but at this point the less fuss the better.
Oh I wish I could distract myself from the ear thing. I have been working on the wedding program. I like that. It distracts me. Its one of the things I can focus on.
I joined a Meniere's forum. The posts still scare me but I figured I may post something someone is interested in some day. So far I have just read.
Hey tinnitus! Shut-up! People are trying to think around here.
So is it working? I have no idea.
Its also hard to explain to people who ask me how I am. I say I'm not dizzy. They say that's good. Then I say no its bad. I am supposed to get dizzy so I will know the gentamicin is working. They just look at me like I am standing on my head. I shouldn't have told anyone I was getting them.
Other than feeling like I am waiting for the moment of doom, I am ok. I have not wanted to do much wedding planning though. Once I calm down about the Meniere's, I will get back to work in earnest. As far as I know, most of the big stuff is all set up. I have to decide on exactly what is happening during the ceremony. And what music will be played. We are having problem getting a live person to sing or play on the holiday weekend. So we will probably have recorded music during the ceremony. That is not great but at this point the less fuss the better.
Oh I wish I could distract myself from the ear thing. I have been working on the wedding program. I like that. It distracts me. Its one of the things I can focus on.
I joined a Meniere's forum. The posts still scare me but I figured I may post something someone is interested in some day. So far I have just read.
Hey tinnitus! Shut-up! People are trying to think around here.
Friday, April 25, 2008
Like Fresca
Well the Gentamicin treatment hurt. I can't lie.
The doctor discussed my options: Gentamicin, endolymphatic sac decompression and vestibular nerve section (vestibular neurectomy). I chose the gentamicin because it is non-surgical and is 90% effective.
Then he went ahead and gave me my first treatment. I was scared to death so I just wanted to get the first one over with. He numbed my ear by injecting an anesthetic into my eardrum--that was awful, awful awful. I thought that was it. But he was just starting. He put a tube in my ear-like they put in a child's ear. Then He injected the gentamicin through the tube. It was like having fresca poured into your ear! It fizzed and it sounded just like liquid pouring down a funnel. Yikes.
But now that the tube is there he will just have to put the gentamicin in, no more shots in the eardrum I hope.
I feel pretty good today--just really tired. I have not been dizzy or had vertigo. The doctor said there will be dizziness after 3 days when the gentamicin has had a chance to work. I am not looking forward to that but if it means it is working I will look forward to it.
It feels good to have done something to help myself. I can actually feel hope.
Take that Meniere's! HA, HA and fooey on you!
The doctor discussed my options: Gentamicin, endolymphatic sac decompression and vestibular nerve section (vestibular neurectomy). I chose the gentamicin because it is non-surgical and is 90% effective.
Then he went ahead and gave me my first treatment. I was scared to death so I just wanted to get the first one over with. He numbed my ear by injecting an anesthetic into my eardrum--that was awful, awful awful. I thought that was it. But he was just starting. He put a tube in my ear-like they put in a child's ear. Then He injected the gentamicin through the tube. It was like having fresca poured into your ear! It fizzed and it sounded just like liquid pouring down a funnel. Yikes.
But now that the tube is there he will just have to put the gentamicin in, no more shots in the eardrum I hope.
I feel pretty good today--just really tired. I have not been dizzy or had vertigo. The doctor said there will be dizziness after 3 days when the gentamicin has had a chance to work. I am not looking forward to that but if it means it is working I will look forward to it.
It feels good to have done something to help myself. I can actually feel hope.
Take that Meniere's! HA, HA and fooey on you!
Thursday, April 24, 2008
Why did the Irish girl go home?
American Idol. I know I am supposed to vote so I should not be upset. But I really liked Carly Smithson. I really liked Michael Johns too. Maybe I just like accents.
Wedding Fog
I can't remember what I have done and what I still need to do. All I know is that as the day approaches I want to do less and feel more. I want to enjoy my wedding day. So I guess I will just stop doing anything? No. Got to keep marching along.
What's up with people sending RSVP's without any name on them? I thought everyone knew that the big "M" on the card is where the guest writes "Mr. or Mrs." and then their name. But I am getting lots of RSVP's back without names at all. So I have some people who are coming but I have no clue who they are. And I have some people who are not coming but I have no clue who they are. So I guess I will know how many people are coming but who they are will be a great surprise for me. That is OK. It will be fun. No one is getting a place card though. It will be stadium seating.
So-invitees-I love all of you- but please write your names on your RSVPs! I don't know if anyone reads this blog or if I am writing into a vacuum but maybe if I send it out there somehow they will know. I am too embarrassed to call every invitee and ask if they could put their names on the cards. But I may have to.
The big swirly "M" is not just a decoration. Put Mr. or Mrs. or even Ms. so and so. So I will know who will come. XXOO!
What's up with people sending RSVP's without any name on them? I thought everyone knew that the big "M" on the card is where the guest writes "Mr. or Mrs." and then their name. But I am getting lots of RSVP's back without names at all. So I have some people who are coming but I have no clue who they are. And I have some people who are not coming but I have no clue who they are. So I guess I will know how many people are coming but who they are will be a great surprise for me. That is OK. It will be fun. No one is getting a place card though. It will be stadium seating.
So-invitees-I love all of you- but please write your names on your RSVPs! I don't know if anyone reads this blog or if I am writing into a vacuum but maybe if I send it out there somehow they will know. I am too embarrassed to call every invitee and ask if they could put their names on the cards. But I may have to.
The big swirly "M" is not just a decoration. Put Mr. or Mrs. or even Ms. so and so. So I will know who will come. XXOO!
Wednesday, April 23, 2008
Meniere's treatment
So tomorrow Dr. Gold will hopefully do a gentamicin injection to start the treatment. I did NOT want to have to have any treatments for this buy evidently the Meniere's is having its way with my left ear.
It will not be too bad. I have to do it to hopefully rid myself of the vertigo attacks.
This is all very new to me. I don't know anyone else who has Meniere's. I would like to though. I haven't gotten involved with any of the on-line forums but I have read them. They sort of freak me out.
It will not be too bad. I have to do it to hopefully rid myself of the vertigo attacks.
This is all very new to me. I don't know anyone else who has Meniere's. I would like to though. I haven't gotten involved with any of the on-line forums but I have read them. They sort of freak me out.
Wedding Preparations Continue
I haven't posted for a long time because all of my spare moments have been spent preparing for the big event. It will be 1pm July 5 at First Baptist Church in Kings Mountain. It is only one afternoon but for some reason preparing for a wedding can take years. Its like organizing the Olympics or something.
So I have been buying dresses, picking theme colors, making favors, choosing and sending invitations and many many other nutty tasks. I don't know what I will do when it is all over. I guess I will spend time changing my name to Welch.
In the midst of the frenzy I have also felt the effects of the progression of Meniere's. I have vertigo attacks nearly every day. If you have never had one, you would not ever be able to imagine what it is like. Let's just say it makes you only care about making it stop.
Briefly, it is like this. I am going to write about it once and then that's it. Promise. First there is an odd feeling that I am receding from the world. I am going backward in space as if someone has wrapped a rubber band around my waist and is pulling me back and down. Also- it would be like going down the tallest part of a roller coaster-backward.
Then everything I see starts to spin counter clockwise. If you spun yourself around rapidly for about a minute you would see what I mean. The spinning is so dramatic that it is impossible to focus my eyes on anything at all. I absolutely can't read when this happens. My ear screeches its own special vertigo siren(Chain saw with coffee grinder accents).
The top of my head feels weighted. So if I move it I feel like it is going to tip over. So I don't want to even move my head. I sweat, my pupils dilate and sometimes I throw up. (Sorry-that was gross) but I need to get this all out, so to speak.
I can't walk without staggering. The cats run for their lives because then think I am going to step on them.
This lasts for hours. It happens several times a day. Antivert sometimes works but sometimes it doesn't.
So Thursday I am going to the specialist in Charlotte who will probably give me Gentamicin injections. A series of these injections should deaden the vestibular nerve from my left ear. This should help with the vertigo.
So that is it. My description of Meniere's vertigo.
So I have been buying dresses, picking theme colors, making favors, choosing and sending invitations and many many other nutty tasks. I don't know what I will do when it is all over. I guess I will spend time changing my name to Welch.
In the midst of the frenzy I have also felt the effects of the progression of Meniere's. I have vertigo attacks nearly every day. If you have never had one, you would not ever be able to imagine what it is like. Let's just say it makes you only care about making it stop.
Briefly, it is like this. I am going to write about it once and then that's it. Promise. First there is an odd feeling that I am receding from the world. I am going backward in space as if someone has wrapped a rubber band around my waist and is pulling me back and down. Also- it would be like going down the tallest part of a roller coaster-backward.
Then everything I see starts to spin counter clockwise. If you spun yourself around rapidly for about a minute you would see what I mean. The spinning is so dramatic that it is impossible to focus my eyes on anything at all. I absolutely can't read when this happens. My ear screeches its own special vertigo siren(Chain saw with coffee grinder accents).
The top of my head feels weighted. So if I move it I feel like it is going to tip over. So I don't want to even move my head. I sweat, my pupils dilate and sometimes I throw up. (Sorry-that was gross) but I need to get this all out, so to speak.
I can't walk without staggering. The cats run for their lives because then think I am going to step on them.
This lasts for hours. It happens several times a day. Antivert sometimes works but sometimes it doesn't.
So Thursday I am going to the specialist in Charlotte who will probably give me Gentamicin injections. A series of these injections should deaden the vestibular nerve from my left ear. This should help with the vertigo.
So that is it. My description of Meniere's vertigo.
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