End of the year 2010

As the end of the year approaching, so far nothing else is new.  I just had brain MRI earlier this month and nothing change from last year so I still have lesion.  My neurologist want to do yearly to make sure no changes.  Also I am on new medication to help for my headaches, it anti-seizure pills but I don't have seizure but treated as headaches.  So far it really helps.  Other than that I am still having vertigo/dizzy here and there.  Mostly I have been really tired lately after having episodes.

My primary doctor is no longer work at the clinic so I have to changed a new doctor and I just met her and go over my case and explain what going on.  She seems nice so far, but kinda unsure about her yet, I will see her again in time and hopefully she good doctor for me.

I am still involve online support groups and these people are my life savers and to lean someone who really understand this disease and how it affect us daily.

Hope all of us Meniere's suffers will have a good year 2011 and spin free someday when there a cure!!

Update

This week Friday I will be having brain MRI to follow up from last year and be sure everything is okay.  I have abnormal lesion and want to be sure there no changes.  I will have the result in next week from today and go from there.  Last week and this week was an awful for me to deal with dizzies and headaches.  I had a good therapist talk yesterday and open up my dark secret thoughts that I never shared with anyone and which I won’t share on this either.  I felt my chest has been lifted off to tell my therapist because I was debating myself if I should talk to him about it or not.  I had a good cry after telling him that.  I have so much to deal with my coping skills and try to place positive thoughts into my knitting and crocheting projects.  On that note, some of my friends suggest to sell my projects on etsy.com and I am not quite ready for that yet since I am doing just for fun and learning new things.  Some of them want to pay me to do those things and I don’t know how to price those so I just started low reasonable price and then go from there if I decided to start up the business. 

Thanksgiving

Thanksgiving was the hardest time for me.  I've been feeling really out of balance, dizzy, headaches but same time I did the cooking for our feast.  It's hard to get thru it but I made it.  I tried the best I could and my husband thanked me for making a wonderful meal and even thou he was sleeping most the day due to working night shifts.  I really missed my family and everyone is either live out of town, out of state, or don't want to have any contact.  Same time I totally feel like no one wants me around because of this disease that caused me have no social life and that I have anxiety issues. 

But the most important thing is that I have wonderful online support group friends who really does understand this disease and we give each other some encouragements to get thru each day.  I also have another blog and it will be mostly same journal.  I am hoping that someone out there who have this disease and able to have hope and to have a cure of this someday as it being research.

I am working on trying to be on low sodium diet and hope this might help lessen my attacks.  I am trying few things and hope this will work for me.  So far for this Thanksgiving meal, I did watch my sodium intake but same time the weather does affect this disease.  It's sucks but just have to live with it.   I hope you all have a great Thanksgiving!

2010 Meniere’s Poetry from Meniere’s Resources, Inc

 

“Meniere’s has stolen a lot from me
You take for granted your activities are free
Free from worry, free from stress
This disease has made my life a mess.
But in the chaos I still exist
My thoughts and dreams creeping into the mist
There will come a time when I will be well”
Taken from a poem by J.Heck
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“I used to remember how to trek places
I’ve traveled a thousand times before.
I reminisce of the music I once played on the piano
But grieve that I cannot ever hear my grandson’s sweet voice.
But now I am physically and emotionally bankrupt working to stay upright
Because this is what living with Meniere’s Disease is like.”
Taken from a poem written by S.Mason
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“Overwhelmed, but not one to be overtaken
I believe in my strengths to attain life’s goal
Each day a new sun rises upon the horizon
Igniting and infusing my once somber soul”
Taken from A Once Somber Soul, Written by R. Kostiuk
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Wife Has Meniere’s
Spins, Falls, Vomits
Unbelievable, Incensed, Frustrated, Accepting
Donis
Written by B. Cook
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“The Beast.
It lurks within us.
Watches our every move.
How we live,
what we eat, drink, smell,
Inhale.
the way we feel,
react.
It plays with our emotions.”
Taken from The Beast, Written by M. Johnson

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Fullness builds
Head caught in a vise
Tinnitus roars
No blocking it out
Vertigo spins
Hold onto the floor
Hearing departs
Lonely silence invades
Episodic reprieve
Relief in sight….
Episodes
Written by L. Weber
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“In the blink of an eye, I started falling
But that’s what happens when Meniere’s comes a calling
Six foot one, with muscles like steel
But no-one can see, how horrible I feel
He looks fine, so he must be, isn’t that what they say
In my shoes they should walk, for one friggen day”
Taken from Drops, Written by K. Clawson
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Spin around the roomsie
try not to go oopsie
spinning, spinning
we all fall down.
Written by DL Bach
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I don’t know how I feel about having this disease
At times it leaves me breathless and falling to my knees
The morning brings such sorrow as I try and leave my bed
As spinning, heaving, follows, as noises hurt my head
I try to smile and fake it telling everyone I’m fine
But if you could see inside me, I’m anything but sublime
...anything but sublime Written by Aladdin
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“I have a new group of friends
I met them on the ‘net’
We never hear each others voice
But they are the best one’s yet.
They are others who are just like me
Who’s lives have changed like mine.
Together we discuss this and that,
And we are doing fine.
We give each other our support
And try to help each other out.
And try to make a difference
In a world that shuts us out.”
Taken from An Ode to Meniere's Disease Written by J. White
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It is a feeling of being in a fog trying to make my way at times to my room, any room and feeling relived to be there. Musical instruments that make various beautiful sounds that create lovely songs can be for me at times very engulfing to my ears. I feel like I am in the middle of the players and want to shout “Stop playing”! I hear all sounds, various sounds in my ears every day, all the time.

Many, many years ago, I enjoyed going to the amusement park, even when my children were grown, I enjoyed the merry-go-round and the Ferris wheel, the excitement and the feeling of the ride, going round and round, no more rides, those days are gone, the feeling is just like those amusement rides in my head when I do get vertigo, it is a horrible feeling!

As I walk, I am sure many times, people have looked at me thinking that I have had too much to drink, because as I am walking, I veer to the left or right because Meniere’s affects my balance. So, I am careful.

My life has changed because of this disease. I never know from one day to the next what will happen, however I do not dwell on what if’s. I choose what I can do and can’t. It hasn’t affected my love for my family or friendships, and life. It is a journey for me, I am enjoying my journey of life as best I can, however, I dislike intensely having this disease, but, hope, faith, courage, and my inner strength is within me to deal with this every day of my life.

What Living With Meniere’s Disease Is Like
Written by Ruth Coole,
Winner of the 2010
Meniere’s Resources, Inc.
Poetry Contest
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“Having Meniere’s Disease is like dressing up in a costume for Halloween…..
The real me is hidden behind the Meniere’s diagnosis……
Having Meniere’s Disease is like reaching for a glass of water to quench your thirst and then finding
that glass empty….. you are always looking for relief….
Having Meniere’s Disease is ….something I have….
But I still won’t let it have me….”
Taken From Having Meniere’s Disease is Like
Written by R. Gibbs
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“I try to take a positive attitude, add a sense of humor, and hang on for the Meniere’s ride
After years of agony and tears,
I now have learned to embrace my wandering gypsy soul side
I strive to minimize stress, eat healthy (low Salt), find peace, and let God be my guide
Meniere’s may have changed my life … but it will NEVER cause my passion, love and care for others to hide”
Taken from Meniere’s…
Written by Donis

Personal Struggle

Since the last couple weeks, I have been struggling with this MD and I feel so overwhelmed with the stress and off balance.  I really hate this disease and it really wreck my life.  Sometimes I felt I just wanna die but I put my thoughts into something else to get myself distracted.  I have been doing knitting and crocheting since it now my new hobbies and I enjoyed making things that I am proud of and not to think the negative thoughts.

The weather been going crazy lately, it really affect me daily like roller-coaster.  One day I have good day and then next day bam I got bad day!!  Some of the nights I couldn’t sleep with all those noises in my head and it really drives me insane!!  I wish my husband can understand what it really like what I am going thru daily and it not “all in my head” type of things.  I still seeing my therapist of how I been dealing with all this.

Last week Sunday was worst attack ever, I went to church and then all sudden I got so dizzy and nausea.  I had to find a safe place and found a room has a couch and I slept for 2 hours to let the attack pass.  I felt so bad for unable to be with my husband during Sunday School class and help him cook lunch for after church service.  It’s hard to deal with it day to day for unknowing what gonna happen next.

Living With Meniere’s Disease Is Like..

Living With Meniere's Disease Is Like...

“It is a feeling of being in a fog trying to make my way at times to my room, any room and feeling relieved to be there. Musical instruments that make various beautiful sounds that create lovely songs can be for me at times very engulfing to my ears. I feel like I am in the middle of the players and want to shout, "Stop playing"! I hear all sounds, various sounds in my ears every day, all the time.

Many, many years ago, I en-joyed going to the amusement park even when my children were grown, I enjoyed the merry-go-round and the Ferris wheel, the excitement and feeling of the ride, going round and round, no more rides, those days are gone, the feeling is just like those amusement rides in my head when I do get vertigo, it is horrific feeling!

As I walk, I'm sure many times, people have looked at me thinking that I have had too much to drink, because as I am walking, I veer a little to the left or right because Meniere's affects my balance. So, I am careful.

My life has changed because of this disease. I never know from
one day to the next what will happen, however, I do not dwell on what ifs. I choose what I can do and can't. It hasn't affected my love for my family or friend-ships, and life. It is a journey for me, I am enjoying my journey of life as best I can, however, I dislike intensely having this disease, but, hope, faith, courage, and inner strength is within me to deal with this every day of my life.”

Ruth Coole

Fall is here!!

October has a strange weather up here with cold and warm days. We don't usually have warms days in October. Got some good news: Green Bay just passed his CGC test today and I am very proud of him for listening all the commands and didn't bark or bite other dogs. We also been doing some pre-training course for doing treatment foster care for kids and we are in hope of doing licence to be that area and someday to adopt children. My stepdaughter Anneliese is moving up here next week and so excited to see her and see my husband and her to develop more father/daughter bonds. And also grow more bonds for all of us Brionna and Anneliese. Both girls are wonderful in our lives.

Well I have been reading wonderful book that I recommend for everyone to understand more about Meniere's Disease, it's called, Meniere's Disease: What you need to know by P. J. Haybach. It's really more in depth and what I can do to help myself and as well others. I am also very active in support online groups in Facebook and as well for Service Dog online support groups. It gives me wonderful supports for those who really understood and currently going thru MD. My therapist said it wonderful that I keep doing that and it not a bad thing to talk more about it than my husband thinks I am too deeply involve and not talk much about it. I want to continue to raise awareness of MD and able to find cures.

Well I am still dealing this MD daily and some days I have bad falls, bad days and some days I have good days. Today it was bad day with very warm weather affect my fullness of my ear, tinnitus and headaches.

One of my online group had a wonderful new name to come up for MD: MEANEARS. LOL Something to cheer us up on our bad days. :)

American Tinnitus Association

http://www.ata.org/store/downloads-0

Share this with your family and friends so they can understand what you are going thru daily.

Before You Judge Me

Before you judge me on a good day, understand what one of my bad days is like!

Life with Meniere's Disease: Before you judge me on one of my good days, you need to understand what one of my bad days is like.

Tinnitus - imagine having a headache caused by a fire alarm ringing or a bee buzzing in your ear continually for a long period of time. You can't hear anything but that fire alarm or bee - It drowns everything else out.

Vertigo - Now imagine yourself as really drunk or with the flu at the same time as the fire alarm is going off. Now imagine that with these two things, you'd be dumb enough to get on one of the super roller coasters that does loop-de-loops or the amusement park rides that spin in two different directions at the same time. I'm not that dumb, but unfortunately I have no choice in feeling these sensations.

During one of these vertigo attacks that can last from several minutes to several hours if not days. I can't keep food or water down, I can't walk, and in order to get out of bed to go to the bathroom, I have to crawl like a baby on my hands and knees. The movement makes me so ill, if I'm able to crawl back to bed, I'm covered in sweat from exhaustion. Otherwise, I keep a pillow and a blanket at the bottom of a linen closet in the bathroom so that I can pass out lying across the bathroom floor. I end up sleeping for days after one of these attacks, only getting out of bed to go to the bathroom or to get something to drink, if I think I can keep it down. I have to call my family to see what day it is when I wake up. That is, if I can hear.

You see, this disease while playing havoc with your balance and equilibrium, also reeks havoc with your hearing. It wouldn't be so bad if the hearing loss was constant and predictable. But no, one day I can hear conversation fairly OK, and the next I can be virtually deaf, then the next day I can hear again. The hearing loss can fluctuate, but is usually progressive, and many with the disease end up severely hard-of-hearing or deaf.

Even on a daily basis, your mind is so confused by the signals its getting from your ears that your balance sucks. You run into things constantly because you can't balance well enough to avoid walking into things, or your mind is telling you the object is a couple of inches from where it really is. I don't know whether to laugh or cry when someone teases me about being such a klutz. I could make the Keystone Cops look graceful.

I also have days that my coordination just doesn't seem to be together. I'm carrying something, and all of the sudden I drop it because my brain seems confused as to whether my hand is really attached to my body. I sometimes miss a step and fall because of the feeling that my legs are not quite part of me and I have to focus on them to realize they are there. Apparently this happens because the part of your brain that recognizes parts of your body as belonging to you is the parietal brain lobe and it sits right above your ear, so if the nerves around your ear are inflamed, it can press on this part of the brain, or send the wrong signals to it (I'm not quite sure which), and you can lose coordination.

Ironically, the few high frequencies I don't seem to have a hearing loss in can sound extremely loud, unbearably so. When a baby cries, an alarm goes off, or a microphone gives off feedback, I'd be willing to climb up a wall to get away if I thought I could make it. This symptom is called recruitment.

The disease also plays tricks on your vision. For some strange reason, the nerve that goes from your inner ear to your brain also controls some of your eye movement. Your eyes can twitch or bounce constantly, making focusing on objects, much less print, extremely difficult at times. Your eyes tend not to be able to "track" movement at the same speed, giving you double vision, and a bad headache.

You can get confused easily and your memory and concentration aren't reliable. It's what some people with the disease refer to as "brain fog". Many of them originally were afraid that they may have a brain tumor or Alzheimer's because it can sometimes gets so bad. Finally they find either a doctor whose very knowledgeable regarding the symptoms, or they happen to ask someone else with the disease, and find that this too is a symptom of this blasted disease.

Now try to imagine living with this disease never knowing when one of these periods of tinnitus, vertigo, hearing loss, double vision, lack of coordination, recruitment, disequilibrium, or "brain fog" is going to hit, or how bad it will be. At least with being drunk or riding an amusement park ride, you know what's causing it, and you can make the choice not to do it again. With this disease, there's very little warning if any for these attacks, you don't know what's causing it, and there's no cure - only devices, surgeries, and some medications that can somewhat help alleviate the symptoms. And some of the surgeries are so radical, you think they came from a horror movie about a mad doctor. My ENT surgeon won't even perform any more surgery on my left side, since I have the disease in both ears. He's concerned about what would happen if my right side became worse than what my left side is now.

Understandably, anxiety and depression seem to go hand-in-hand with Meniere's for many sufferers. We often ask how much worse can this disease get? For some strange reason, doctors aren't very willing to give out worst case scenarios.

Now decide if you think I'd be able to do the same things you do on as punctual and regular of a schedule. For me, there's no way. I'm being up front about my limitations. I try the best I can at living up to my full potential. Could if you were in my shoes? They think now that Van Gogh suffered from this disease, and he cut off his own ear trying to escape it.

Yet on my not-so-bad days I may look like a totally healthy, able-bodied person. You ask me "why can't you bend down - pick it up - lift it - drive - get a job - walk without a cane" Its because I know these things can either bring on an attack - I couldn't do them on a regular schedule because of the symptoms - or if I did do them, I could put myself and others in jeopardy if I should have an attack. You have to realize that with my friendship, love, dedication, and loyalty comes the fact that I can't decide when I'm going to have a bad day, and the more stress I'm under, the more likely I will have a bad day.

So, please don't judge me unless you've been in my shoes." author unknown

Big 30

Just turn 30 last week on July 28th. Had good one with my husband and just celebrated between us even though our money is tight and plus I tried to have those "good" day for that day. I told my husband that I am not worry about any other things just DQ ice cream cake and card is good enough and I am happy. Love is all that matters surround me and being there for me through this tough times I am going thru. Also our 3 years anniversary on July 7th and on the 4th of the July we spend a night at hotel for free that I won the raffle so we took advantage to have that time together on our anniversary.

I have been going thru alot of episodes of attacks lately since with all those weather always changes and it really takes tolls on me day by day and don't know what to plan for the next day when those attacks happens. Been having those follow ups with all the doctors past month and ENT believes that my left ear is starting to affecting as Meniere's and if it continue have more problems that ear then we will try the shot again for that left ear.

I am still seeing my therapist and been working on some of the issues and my feelings and thoughts of everything I am going thru. Some of those bad days I feel like I just want to end my world and no one will notice that I am not there. It's very frustrated to have my husband to "get it" what I am going thru these attacks and my struggles living with Meniere's. He thinks that I am getting obsession about going Meniere's online support group. My therapist said I am not and it a good thing that I am involve that group and able to make friends who is going thru all this. My therapist is going to give him "lecture" of having him to "get it" when he comes to my session. LOL

Green Bay has been doing wonderfully during his service dog training and we had some mishap and corrected the behaviors. Service dog is not always perfect but it a long term training and they remember the corrections. He is so perfect for me and able to help me with my disabilities.

Ongoing pains

Lately my ear has been in pain and pressure and getting dizzy. This month I have ENT and Neuro follow ups. I am so fed up with this disease and just wish it go away. Headaches seem increasing more and of course same old tinnitus still drives me bunker.

I have now new therapist and just met him this week and it went well and I still miss my old one since she moved away. :( I am getting by day by day to deal with the angers and MD but it hard.

Green Bay is doing well with his SD training and everyone at Wal-Mart loves him! :)

From Music to the Sound of Hell by Edeltraut L. Scheffler-Plath

From Music to the Sound of Hell

Once--my voice rang out with joyful glee,
Others used to sing with me.
Once--I played accordion, mouth organ, and mandolin;
I even played the organ, and the violin.
My ears were very sensitive:
To them it was offensive--
To be subjected to the sound
The clock beside my bed made--and I found--
To get some rest
It would be best
To hide it under a hat;
Henceforth, I did just that.

Now--times have changed;
My hearing is deranged,
I cannot sing,
No instrument will bring--
The music I intend to send.
No lovely tune I hear,
Loud noise I have to bear
In both my ears and head
During days- and nights in bed,
Which never gives me peace.
I do not find release
From humming, strumming, banging, clanging,
Slapping, clapping, hissing, sizzling, howling, growling,
Orchestrated sounds.
There are no bounds--no limits set--
To my regret
For this destructive torture.

No one understands my pain.
My only wish is--to stay sane.
I learned to hide what bothers me,
Therefore, not a one can see
The devastating state I am in;
The horrible calamity
That frightfully engulfs me,
Keeps petrified me in my chair
In agony, and deep despair--
Not knowing what's in store for me,
Praying: "Please God, let this be
The last of these unbearable attacks.
I do not mind--if I can't hear,
Therefore, I have to bear
Cruel disrespect from all,
Just save me from the fall
Into this hellish nightmare."

My body is deprived of sleep
That's restful, long and deep.
More often than I care--
I doze off in my chair,
Don't go to bed at all,
Why bother? I don't fall
Asleep there anyway,
Night seems like day.
The discord music in my head
Never stops--Instead--
It's getting worse each day.
I wish there were a way
To end this dreadful agony.

Edeltraut L. Scheffler-Plath.


(c) 1999

Poetry for Meniere's suffers

By: Gloria S.Castor
Copyright©1997 Gloria S. Castor

When the night is dark and no one’s around
Why is my head so full of sound
As I lay down for a good nights sleep
I know this night will be a repeat
A hum, a roar and buzzing as well
To me a nightmare, a living hell
No way to stop the sounds I hear
For what I have they call “Meniere’s”
And sounds deep within my ears

I use to pray most all the time
For God to clear this head of mine
So many years have passed on by
And many days and nights I’d cry
But still the sounds lives in my head
At times you wish that you were dead
The Doctor’s give you pills to take
But most the time you lay awake
I pray to God my soul to take

Now I lay me down to sleep
But most the time I lay and weep
No one knows what it is like
Because I always look so right
I try to do the best I can
But most folks just don’t understand
Some can’t understand what they cannot see
And at times this causes pain for me
But I can’t give up, it’s my life you see

Now the early morning hours are here
And the sounds are here within my ears
But I will go and try to sleep
And pray my Lord my soul to keep
Maybe soon it will go away
Who knows? Is what the Doctor’s say
I’ll always thank the Lord above
For “He” understands and gives me love
I get my strength from up above

Only a person who lives with Meniere’s
Or Tinnitus, the pain, the fears and tears
Can really know of what I speak
And a cure for these people is what I seek.

Spring to Summer Season

During spring, my allergies has increased very badly and I end up having pink eye. So my dr got me medications to get it under control. My energy level is going great but at the same time I am unable to sleep in good reasonable time. I have been staying up anywhere from 2 to 5 am. So I am getting there. I have been getting out to do outdoor landscaping outside my house and it really keeps me going and making my own stepping stones.

Green Bay has been doing wonderful during service dog training and he really did great job. Speaking about that, I went to City Prayz concert last night and I didn't realized that he has been jumping on me and pawing me to let me know my dizziness is coming soon. So by toward the end of the concert I became so dizzy by the effects of the light simulations. I told my friend that we need to go and to take me home. So I am glad Green Bay is there for me to warned me. I had to come to decision that I am unable to go any concerts since I had the episode.

Summer is here and I noticed the heat really affect my dizziness and I tend to stay indoors. Nothing much here is new but just to deal one day at a time.

Spring Season

Well Spring has come!! Allergies season is here as well. Having MD is also trigger dizziness and vertigo attacks. Which I am having it now and it awful flare ups and it hard to deal with it.

I had to go back to do VRT again to do balancing exercise because I have been falling alot at home. My therapist said I need to go back to use the walker again around the house so I can stop myself from falling. Which it is sucks. At least it all about safety. I had great falls where I could have broken hips and all.

I have now going back to my counseling session since I am now back on insurance and glad that I have someone to talk to and try to deal with all the issues I am now facing ahead and try to take one day at a time. I have been really tired lately and have no energy so my dr prescribe me medication at low doses and then later increase the doses for the moods and energy.

Sometimes I do feel all alone and no one do understand me what I am going thru. Sometimes I feel like I am stuck in the darkness and there is no light in the tunnel for me to come out toward the light. It so frustrated and some of those days I feel so crazy.

Been awhile

After having my 2nd round of inner ear injection, it been going okay but been feeling more dizzy and alot of headaches, but less vertigo attacks. Hope this time works so far. Been having alot of depression moods lately and very cranky. Just feel like I just want to be left alone so I can get this headaches go away.

I have been working on my dog to be train as a service dog for the last couple months. Green Bay has been doing really well and working on some corrections. Today I am really upset with my husband and mother in law that they were both scolding me that I don't need service dog since I am not blind. They don't understand what a great benefits for me having service dog as a hearing and PSD and as well balancing. My mother in law said you have a husband and you don't need a service dog and that I am being a childish. That's makes me really pissed me off and I just shut my mouth and didn't want to cause an arguments. My husband said it makes him feel embarrassing having a service dog but if I was blind he won't be embarrass. I am totally deaf and having psychiatric disorders.

I love them both but they need to understand that Green Bay helped me alot but they unable to see that.

Falling Down

I have been falling down many times over the past week. When I was getting out of bed in the mornings and seems like I lost my balance. And like this morning when I took my dog outside to have him do his business. I fell over the ramp when I have no balance. Seems like it getting worse day by day with all the falls. Tomorrow I have 2nd round of inner ear injection and hope this time will help. It takes to get this to work for me. I heard some people who took the injections and it doesn't help them much just a short time and then went back to attacks again. It seems like I am having one of those like these people. It works for short time but it went back to where I was before.

I have been getting weird visual that something moved or something that wasn't there. I guess it just the way the brain is interrupted my vestibular system and it takes time to get the brain to get it right for what I am seeing. I have checked online for people who have experience it and sure enough I am not alone with this Meniere's Disease.

I am trying to find a way to reduce my stress level so it won't trigger the attacks. I just started learning how to knitting and it seems to help somewhat and sometimes when I knitting too much and/or seeing the color patterns I have to put it down and need to lay down to let this pass. I am trying to find a way that I can able to enjoy things that won't make me too sick with nausea and having vertigo attacks.

Well just pray that tomorrow will goes well with the injections.

Another Round of Injections

I have so many appts this month...I have another round of gentamyclin injection in my right inner ear on the 12th. Also another round of trigger point injection on my left shoulder/neck area on the 19th. I have been dizzy today during my ENT appt and been having the headaches since this morning. This is everyday battle for me to deal with the vertigo and balancing.

Mall of America

This past weekend my husband and I took little trip to visit Mark's sister and her husband.  On Friday night on the way there to Forest Lake, MN I became very car sick and slept the way there.  I took my melczine medications and still very dizzy.  I almost threw up in the car. 

Then yesterday we drove down to Mall of America and I still became car sick and felt little bit better when we get some lunch. Walking around the mall was so hard and I lost my balance few times and it was too much simulations going on with having so many people there.  My husband has to hold my hand the whole time so I won't fall as we walk around the mall.  We brought few things there.

Later last nite I felt so ill and had vertigo attack and slept early like 6:30 or 7 pm.  My head was spinning and with all the excitment and simulations trigger the attacks.  This morning, I woke up feeling ill and my head is so stuffy and I almost threw up the middle of the nite and been coughing alot.  I am still dizzy this morning and about to go back to bed to let the attack passes.  Then we are going back home later today and I might be sleeping on the way home again.

Healing the Wounded Heart

Today was an okay day.  Went to see my neuro dr for follow up and it went well.  Been feeling lightheaded and my BP was bit high.  I was dizzy and feel so nausated.  I became so tired so I had to lay down for a bit.  I have been thinking alot of some people and that I missed them so much.  All I want to just to cry and want to talk to someone that I once dearly love.  I hope that there will be some healing between my stepsister & nephew down the road.  I just hope that we can bind up our wounds and just start over with a fresh love, heart to heart, and sister to sister. 

I am just struggling with day to day activities and try to get my energy as much I can.  Lord I asked You to heal me thru your Holy Spirit and Your Grace and Your Love abide in me.

Thoughts

Today was okay but having hard time with negative thoughts that comes to my mind.  I just don't have any energy in me and been having down day.  The world was spinning again and it really too much for me to take it over and over each time I have it.  I just want this to end for once in my life.  I feel like I want to go out there in the world and just beat the crap out of them.  I would like to get myself bean bag and hit it hard and take my anger, frustration, and the pain to hit the bean bag for this.  I basically shut off my thoughts to anyone and sometime to my therapist.  I just don't know what I really want in this life and this moment.

Is it Monday?

My husband woke me up 6:50 am this morning to be sure I am up before he goes to work. I have so many errands to run today. Waking up was the hardest for me to get myself ready. I woke up with a bad headaches and little dizzy so had to lay down for a bit to let it pass. Then feel little bit better as the day go by. Then all the sudden I had a major headaches this late afternoon and getting tinnitus was really worse. Tinnitus is the biggest enemy for me since it drives me nuts with all the noises in my ear. I have so many noises like buzzing, clicking, skreiking, cricket-like noise and etc. Sometime I am unable to go to sleep on some nights with all the noises in my inner ear. I am hoping to keep watching my salt intake to help reduce the attacks. So I don't know if this will work for me but all I can do is try it.

Fighting thru the Storm

Today I have awful bad headaches and doesn't go away.  I been feeling so tired and weak and just want to sleep more.  I am having vertigo attack today and I feel so crappy after it passed.  I feel like I want to fight this disease but the same time I want to give up.  There is hope for me and some day I will be heal by faith.  I know the Lord is with me and sometime I don't feel like He is.  I longed to be with Him and be under His wing. Where are you, Lord? Have you forsaken me?? That my questions I sometime ask.  I know He never forsaken me in my heart.

As the World Turns

Waking up in pain of headaches and dizziness.  Feeling so tired and just want the spinning world to go away.  I feel so alone where no one can understand what I am going thru.  Even I still have Facebook VEDA group support, I feel I can connect everyone who been thru it all.  With family and friends I am not sure if they can understand it.  I hate when people say well she need to do this and that and it might help.  Some of the methods won't work for me and it cause me so sick with all the simulations and motion sickness.  I had to lay down and shut my eyes so the world can stop spinning.  I wish I can be 100% better but I am not, it like being Alice in Wonderland falling down the hole that go down forever until you hit the bottom and unable to get back up to real world again until you go thru all the mazes.

Hardship

It's been almost three years I haven't been able to see one of my family members since I shattered the relationships between my stepsister and my nephew.  I longed to have the relationship back and I don't know if I ever able to get it back.  I know I have done wrong and I took the blame in this situation.  The more I thought about it how it related to my behaviors that linked to my depression that I lashed it out the wrong way between them.  Right now my stepsister doesn't trust me anymore, but how can I get the trust back?  How can I able have relationship back with my nephew who I dearly love him so much and don't mean to hurt him?  I cannot able to change the time back, what done is done.  I knew in my heart they have forgiven me but they won't forget what happened.  Will they let me have another chance even I been given so many chances?  I really need some my family members back in order to support me thru all of this illness I am going thru.  It's the hardest thing I ever faced to lose someone I loved and doesn't want me around anymore.  I wanted to able to start over and have a new beginning between three of us and don't know when it will be.

My Struggles

This is my new blog that I changed to My Life and Meniere's as the blog heading.

So many things happened since the last blog I wrote. My brother, Kenny, did moved in with us last year in February and we had good relationship and things were out of hands and I am unable to help him out all the choices he made. So sadly, he has to moved out last month of January this year. He is living back with his mom for awhile and planning on moving back here in Sparta to live his own place eventually. I love him and I do missed him so much.

We have a new addition of family pet of the basset hound, Flash. We had him since he was 8 weeks old and he is now 9 months old. His birthday is April 20, 2009. He is full of energy puppy and he can be stubborn when he not listening. Overall, he such a cutie puppy. Green Bay is about to turn 2 years old on February 24th. He is such awesome dog. Packers is around 7 or 8 years old, which we don't know his actual age since we adopted him in August 2007. All the dogs are wonderful and care for.

Well as for me, I have some health issues over the past year and I have just been diagnosed Meniere's Disease, which is the inner ear disorder. I started out having upper respiratory infection in March 2009 and then ear infection on my right ear on Easter. Then all the sudden I had total hearing loss on my right ear, ongoing vertigo attacks, and loss of balancing. I was on steroids for awhile and it helps but it came back worse with the attacks.

So I lost my job position at FSH since I was unable to work as a baker. I had to leave the system since I don't know when I can go back to the working world.

I am still struggling with the attacks day by day. It hard to plan my day since I don't know when the attacks will occur. Some days I am good but can sense off balance and some days are worse that I had to lay down to have my attacks go pass. I have hard time walking in the total darkness and I used walker in case I needed.  I get brain fog most the time and have hard time to focus and remember what I am suppose to do.

I just started a new treatment of gentamyclin injection in my inner ear beginning this month. I sense having some problems but my dr said it the treatment is working and he does expect I have some issues that the brain is trying to get used to my surrounding. Like bouncy vision, unsteadiness balancing. I may or may not need another round of treatments and we just wait and see for my next dr visit. I just had another attacks this week and it passed for few hours later. It really makes me so tired and had to sleep after the attacks.

I also have struggle with having major depression and PTSD with anxiety everyday. It really hard on me having all these issues. My husband is trying to be supportive and he doesn't understand what I am going thru with depression and how my body affect by it.

So I am hoping to keep up my blogs of how my day goes.