Facing the inevitable

Having a chronic illness inevitably changes a person.  You can’t run or hide from it.  It will change you.  It will change how you do things, how to plan, how you play, how to look at the rest of the world.  Maybe this isn’t the most difficult part.

The most difficult part may be that while you are changing, morphing into a ‘chronic’ – those around you are not changing.  I mean, they may try to change, or make small concessions because they feel obliged.  They both love and fear you.  They struggle to readjust their expectations of who they believe you should be.  Immediate family often struggles with this the hardest.  They are befuddled.  Suddenly you stop being the person you were and who they thought you should be, into someone who lives like a chronic.  My disease does me the favor of removing control over my own body.  So I can’t jump out of bed in the morning, most days I can’t jump.  I have to be conscious.  I dream of being spontaneous.  Spontaneity and my Meniere’s Disease does not mix.

I can longer be independent.  Growing up, I had a lot of strong-willed, independent women to look up to.  I wanted to have the muscles and strong-will like my grandmother, I wanted to have the backbone of my mother.  I hoped to not need a man or woman to support me.  I wanted to be able to lean on only myself.

So it’s time I face the inevitable myself.  It’s time I adjust my own expectations of myself.  Being selfish is a negative attribute, but when you are a chronic you have to be selfish.  You have to learn to say no without explaining yourself.  It’s so much easier to say than to practice.

Sometimes

Sometimes

October 7, 2007

Sometimes I don’t hear you,
It’s not that I’m stupid or don’t understand,
So I’m sorry, just please speak louder.

Sometimes I can’t look you in the eyes,
Because when I focus I may get dizzy,
So I’m sorry, just please don’t look away.

Sometimes I may stumble or fall down,
Because my balance is always off,
So I’m sorry, just please don’t make fun of me.

Sometimes I may lose things easily or drop things,
Because my coordination is always off,
So I’m sorry, just please ignore it because I can’t help it.

Sometimes I may be frustrated or upset,
Because taking every step with your disease wears down on you,
So I’m sorry, just please be patient along the way.

Sometimes I may withdraw from you,
Because you may not understand,
So I’m sorry, I will always come around.

Sometimes life is worth fighting for,
Because someday, somehow, I will be ok.

Guess who?

I have decided to continue on with my blog. After a timely hiatus, and some much needed reflection time I have decided to continue on and put my thoughts, feelings, and struggles out into the world. I began this blog with the intentions on education about Meniere’s Disease and try to not things get personal. However, after my surgery and the complications I have been struggling with, things got very personal, very fast. Some would say I have become negative, dark, morbid. I disagree because anyone who has had experience with Meniere’s Disease knows that there are good moments and bad moments. Expressing both are healthy and necessary for me.

I chose a song by a local artist group (Atmosphere) to post here. I love all of Atmosphere’s work actually. They have a huge cult following and I was introduced to them when I moved to Mankato, MN for my first year of college. While the song is not super happy and chipper, parts of the song have such deep meaning for me. For those of you who may have read it and not understood why I posted it, I would like the chance to explain a bit.

Been payin dues for a decade plus,
Before that i was just another face on the bus
Tappin my foot, to the beat on the radio

I have had Meniere’s Disease since 2006. I have been paying my dues, putting my energy, my life into this disease for so long. Before this disease, I was just another face on the bus, tapping my way through growing up. I had a normal childhood with the trappings of a bratty teenage girl. I starve for normal, average, typical.

The world keeps a balance, through mathematics
Defined by whatever youve added and subtracted
Im pushin on the hammer, to trigger the brain
Embrace how i live it, god loves ugly

The first few words of this snipit are so true for me. Everything is a balance, what you add to this life and what you take away. Through all of what I have been through I have the understanding that I have to find a way to embrace how I live my life, and what that entails. God loves everyone, even the ugliness that we ALL possess. My ugly is my Meniere’s Disease.

Nobody sees tears when youre standing in a storm
Abandoning the norm, and handling the harvest
Measuring the worth by the depth of the hardships
I welcome all the hatred you can aim at my name
I held on to the sacred ways of how to play the game
When the soldiers started runnin short on rations
I began tappin the egg, to spark the hatchin
Make it happen
And take this captain to the gallows
I keep steerin us into an area thats shallow
Talkin to my shadow, he advised me not to worry
He said i should plant my tree and let it rise out of the fury

This whole piece of the song really touches me. Nobody sees tears when you’re standing in a storm. Since my surgery, everyone including myself has been so caught up in this storm that we have been through. My tears, my mothers tears, my fathers tears, those tears are hard to see when everyone else is caught up in the moment of everything else. Everyone has struggles, some more intense than others, and on one level people are judged and their worth is measured by what they have been through. I want my worth to be measured by how I get through and survive this. When I think of what I am going through I think of a wildfire, burning and destroying everything in it’s path. When the fire settles, and that first green bud of life pokes through the scared ground, that is me. That is me after this experience. I have planted my tree and am going to let it rise from the fury.

Why scream, when you can lose yourself inside the wide-screen
Let life be a bowl of melted ice cream
Or be the deer thats caught in my high beams
Im rollin with the lights on, scared stiff
Reality is just too much to bear with

This last piece is really where I am today. My life is a bowl of melted ice cream – and I have to let it be that way for now. I’m walking around terrified, scared, never knowing what each day is going to bring. Reality is so much to bear right now.

I am the first person to understand that everyone interprets things differently. Music is a difficult one because you never know why someone enjoys a particular song. I try not to jump to conclusions because there is some music that I listen to that a majority of the people that know me best wouldn’t understand why I like it. Often there are pieces of a song that I connect to and the rest are just words.

Music and writing have always been a way for me to escape, to express. The only thing I want from this life is to be free, free from Meniere’s Disease, free to express myself, free to comfortable in my own skin. From now until this blog stops being cathartic for me – I am going to be real. I am going to tell you all how it feels to live with Meniere’s Disease. I will share the highs and the lows, because it would be silly for me to pretend that everyday is filled with lollipops, rainbows, and roses. Some days are – some are not. I have moments of pure joy and happiness. I made THREE meals this past weekend by myself without needing help. I played with my cats, I kissed Matt, Kara made me laugh so hard I cried… those are the moments that define my happiness. It is difficult for me to talk about the good times for some reason. Some would say I have an easier time expressing negative feelings. Maybe that’s true – but I don’t think so. I think we connect best about our struggles. We find solace in knowing that other people are going through what we are going through. If I come across a blog or someone who says that Meniere’s Disease is an enjoyable way to live your life I leave the site or stop the conversation. Why? Because it isn’t real. I can’t relate to that because I struggle. I hate this disease. Anyone who says they don’t are entitled to feel that way and actually I am jealous because I can’t find it in myself to roll over and let it own me. I own my disease, it doesn’t own me. But that surely doesn’t mean I don’t struggle with it and have moments of utter fear. My posts speak to the fact that I won’t and can’t give up. I have never let any struggle in my life beat me. No one owns me. I am head strong and stubborn and Meniere’s Disease will never take that away from me. This blog may not be for everyone. If expressing myself the way I do it offends someone, I am so sorry for that but you are welcome to move on. I won’t be upset with you for it.

I recently found a brilliant website called DizzyDad.com he blogs about his experiences with Meniere’s Disease. He is not afraid to talk about how crappy things can be and how findings those pure happiness moments are possible too. It is so real and raw for me and I can relate to it. I hope you check it out and that you stayed tuned in here. I will do my best to keep a balance. I love each and every one of you who visit this site and can relate to what I am saying. Please feel free to comment about anything. If you love or hate what I have to say I would enjoy hearing it.

Godlovesugly – Atmosphere

 “Godlovesugly”

 I wear my scars like the rings on a pimp
I live life like the captain of a sinking ship
The one thing that i can guarantee
I’m like a stepping razor, i suggest you stay fair with me
Been payin dues for a decade plus,
Before that i was just another face on the bus
Tappin my foot, to the beat on the radio
Dreamin ’bout the mic and the money and the ladies
Oh mom, i promise im gonna be large
Someday im gonna stop tryin to borrow your car
Gonna go far, with charisma and skill
Until they put my face on a million dollar bill
Atmosphere, its just a ten letter word
Discretion is the name of my cement-feathered bird
And if you didnt hear, fuck whatevers heard
I think you got the sickness i suggest you get it cured
Caught up in the mix, of a bottle full of fix
Im gonna hobble down the street ’til i reach knob creek
Its not that i dont like you, i just dont wanna speak
You fuckin freak
Now keep your days out my week
The world keeps a balance, through mathematics
Defined by whatever youve added and subtracted
Im pushin on the hammer, to trigger the brain
Embrace how i live it, god loves ugly
 God loves ugly…Once upon a time in minneapolis, yo
I damn near had to steal the show
I stepped on the stage, who is it?
My names slug ive come to kill a couple minutes
Whats up with the way, that everybody gathers around each other
So they can steal each others sound
If its all about gettin down with the get down
How long i gotta wait for these fools to sit down?
Appears more clear in its simplest form
Nobody sees tears when youre standing in a storm
Abandoning the norm, and handling the harvest
Measuring the worth by the depth of the hardships
I welcome all the hatred you can aim at my name
I held on to the sacred ways of how to play the game
When the soldiers started runnin short on rations
I began tappin the egg, to spark the hatchin
Make it happen
And take this captain to the gallows
I keep steerin us into an area thats shallow
Talkin to my shadow, he advised me not to worry
He said i should plant my tree and let it rise out of the fury
So give me some light, a little love and some liquid
Im gonna creep through the night
And put a plug in the spigot
And when the water grows
And the dam starts to overflow
Ill float atop the flood, holding on to my ugly Why scream, when you can lose yourself inside the wide-screen
Let life be a bowl of melted ice cream
Or be the deer thats caught in my high beams
Im rollin with the lights on, scared stiff
Reality is just too much to bear with
Paranoid, walkin around careless
No wonder youre in love with your therapist
Go to sleep my little time bomb

Fighter

Recovery continues to be a long process. No two days are the same and it keeps being difficult to see the improvements for me as I am stuck in my head all the time. I have a difficult time biting my tongue because everyone wants me to be better, but they don’t understand the fear that is ever present in my life. Fear has wound itself around my DNA, it is impossible to hide from. The fear is so intense at times it takes control of my body completely. It is almost as if I have been running on fear for the last couple months and no longer know how to function without the fear. Fear kept me going to my surgery, surgery came and only made the fear worse… I am still running on it and I guess I do not know what to run on without the fear. How are you supposed to reprogram your brain to not be afraid of something you know is always lurking just below the surface? My little monster that creeps and crawls right below my skin, how do you stop being afraid of that? How do I convince the warrior in me to get up and keep fighting, when all along I thought I wouldn’t have to fight anymore?

Life is so unfair. Meniere’s Disease is so unfair. I am trying to rise above it and keep fighting, but how can I fight against something that will never go away… how can I justify fighting if the battle will never be won? Is deafness winning? Being deaf means no more dizziness, that is like saying 2+2=6? I hope this doesn’t become an option I have to contemplate, I want to be better, I want to get up out of this chair, I want to ride my bike, run, laugh honestly, freely.

I have promised I won’t stop fighting and I won’t, I just hope that those around me don’t forget how hard fighting is.

Broken Pieces…

I am broken. I do not know if I can be fixed. Remaining positive becomes more and more difficult as the days pass and the attacks get more and more intense.

This last week has been a bad one. There have been several times where I have wanted to seek refuge at the hospital so the world will stop spinning. Even when the world does stop spinning and the attack passes, I am left shaking, terrified, mentally and physically exhausted. The strangest things pop into my head in these moments. I have read about how difficult pregnancy is with Meniere’s Disease, how am I going to raise a child? How I am going to work? How am I going to put my pants on in the morning?

I am so alone. I do not mean alone physically, or emotionally – it is a kind of alone that only victims of this disease can feel. I am forced to be dependent, I am forced to be a jigsaw puzzle with a piece always missing, I am forced to be angry, desperate, clinging to the sliver of hope I have left. How do you deal with that? My warrior isn’t winning the race against this disease, instead the scared little girl is right below the surface. My little monster rears it’s head and I am constantly consumed with doubt and fear. I feel like giving up, letting the Meniere’s take me, swallow me whole.

My thoughts are scattered and discombobulated. Our cat knocked something off of our fridge this morning and it broke into half a dozen pieces, I tried to glue it back together and it no longer fit together correctly. I stood in the kitchen sobbing because I felt like it was a metaphor for me. Broken into several pieces, and no matter what adhesive was used I would never be the same. Matt, my dad, my mom desperately want to fix it, but even if we get the piece to fit together there will always be cracks, fissures, visible to anyone who looks at it. It will never be the same, I will never be the same.

I think that eventually that will be ok with me. I will adjust to whatever ‘normal’ will mean for me. It won’t be easy, there will continue to be bumps in the road. I will pick up the pieces, put them back together, try to admire the cracks and fissures. I will put the puzzle back together and never stop searching for the missing pieces. No one should ever stop searching for the missing pieces.

Trickery

The worst part about recovery is that there is always an ebb and a flow. Since coming home from the hospital I have had days where I feel like everything that happened during my hospital stay and the days that follow were a bad nightmare. Then the universe seems to play a trick on me and the next day I am feeling terrible again. It is unfair, heartbreaking really. I get angry when I can go from feeling so good to so horrible in a matter of hours. I try to tell myself the moment will pass and I will be able to catch my breathe and relax, but feel like it will never come. When it finally does come I am filled with complete fear that the dizziness will come creeping back. It’s a sick little cycle. Being a prisoner in my own body, having no control over what is going to happen makes me angry, makes me want to peel off my skin like a swimsuit. I never feel more alone than in these moments.

Regrets…

Everyone says they want to live with no regrets. It’s a noble thought, and despite how poetic it sounds I struggle to really believe that there is anyone who lives with absolutely no regrets. No matter how big or small, there are always things that we would do over if we had the chance, or things that we did which put us on a different course for our lives that we wish we could alter. I don’t think there is any harm in that… we are human. It is the human condition to change our minds, we should never set ourselves on one path. Regrets are part of growing, learning. Without regrets, would we be human? I have been asked if I regret a lot of things in my life. Some ex-partners who shall not be named, things I have said or done to people, choices I have made about work or school. Absolutely I have made choices I regret, especially about people I have chosen to rent space in my head and my heart. I have recently been asked if I regret doing this surgery. For once I can say with certainty that this choice is not one I will regret.

Just because things are extremely difficult right now doesn’t mean they always will be. Matt and I talked a lot about the risks of surgery and decided that short term risks of doing the surgery highly outweigh the long term risks of not having the surgery. There are always options I have consider if this surgery doesn’t work the way we planned. Since 2006 I have struggled with the thought of being deaf. The surgery I had performed has been found to maintain hearing, rather than harm it, however as I age I have the chance to lose my hearing faster than people with healthy ears. I love music, I love hearing the birds, hearing Matt sing in the shower when he thinks I am not listening, I want to hear ”I do” at my wedding and hear my kids call me mom, but to never feel this way again I would give it all up and hope to never regret making those decisions, but if I did regret them I would know that I am allowed to do that!

Don’t be afraid to regret things in your life. If my Meniere’s has taught me anything it is live, don’t sit around and wait for life to come to you. I did that for many years and once I am healed I am never going to sit at the sidelines again, I will never fold again. Grab life by the balls and make decisions you are going to regret. We are HUMAN.

Grocery Store

I am happy to announce that I made a successful journey to the grocery store today! The car ride seriously sucked, but once I made it to the store I did alright – I even selected some items from the shelves! I couldn’t carry out any groceries with my weight restrictions and one hand using my cane for extra balance! But hey, I ventured out of the house and didn’t completely fall apart. I am tired from my excursion but wanted to add a few posts before the weekend.

Surgery S.O.S.

All of the thinking, planning, and discussing came down to the night before surgery. I knew that 24 hours from then I would have had my surgery and would be home recovering. I ate a good dinner, scrubbed with surgical soap that makes your skin feel like the Mojave, and talked through my nerves with Matt. We held hands, hugged a lot, and smiled knowing that soon it would all be over. He can read me like a transparency and knew that I was scared, nervous, but excited and ready. We both laughed at how my instructions said to ‘get a good night’s sleep’ – we were so wired even though we knew we had to be up at 4:00 a.m. to get to the hospital at my check in time. We sat up and laughed, cried, and talked about he assured me that everything was going to be just fine, and if it wasn’t he was here for me, no matter what. Little did we know how far his compassion and love for me could stretch.

We both woke up bright eyed and bushy tailed at 4:00 in the morning. I had to scrub with the surgical soap again, got dressed in my new pajamas we had bought just for the occasion, I hugged my cats and told them to behave themselves over the next few days and to be good for daddy and grandma, as my mom was planning to stay the full week after surgery so Matt could go back to work. We hopped in the car and met my parents at the hospital. We had to walk what seemed like miles to find the right registration desk and finally were seated in the waiting room.

The desk assistant let us know things were running a bit behind so we waited what seemed like forever and finally my name was called. Matt and my parents waited while I got my IV, peed in a cup, had vampires suck some blood, and talk with a mirage of nurses, docs, anesthesiologists, Dr. Paparella’s fellows who would be overseeing my surgery, and finally my family was shuffled back in. Matt’s mom had taken the day off and came to the hospital as well. We all sat very quietly waiting for my turn under the knife, I kept telling myself I can do this, I have to do this, too many people need me to be me, I have to do this. When the tech came in and said it was time to go of course I no longer was the master of my own bladder and had to pee, so I kissed my mom, dad, and Matt’s mom. I saw the tears in everyone’s eyes and felt them swelling in my own. Matt helped me to the bathroom with my IV bag and we had one last private moment where I told him I was scared and asked him to reassure me that I would be alright. He did, we kissed, opened the door, and I got back on my hospital bed. The tech injected Verset into my IV, which is a lovely drug when you need it and the last thing I remember is Matt holding my hand until the last moment when I entered the OR…

I woke up with an oxygen mask on and heard someone telling me it was time to wake up. I obeyed and opened my eyes. I wasn’t in pain, I wasn’t scared, I was sweating because they have these new hospital gowns that have a hole that a tube can be attached to and they can blow cold or hot air into the gown. Apparently I had the after anesthesia shakes so I tried to get out I was sweating and the nurse turned the air off and pulled my oxygen mask off. My throat hurt, it was dry, cracked when I tried to talk and I felt pressure on my forehead from the tight pressure bandage they have put on that wrapped from my left ear all the way around my head. I squeaked I was thirsty and after they gave me an ice chip I asked if I could see my family. Moments later, the first person I saw was my dad. I remember trying to say, “Daddy” when I first saw him, but I know my eyes swelled with tears again at the sight of him. I don’t know why in that moment seeing him felt so good, but it was the biggest comfort I could have had at that moment. I was going to be alright, otherwise my dad wouldn’t be smiling and have tears in his eyes. Then Matt, then my mom, then Matt’s mom came into my vision and I felt that calm again, that peace. My dad told me that Dr. Paparella said the signs of Meniere’s were extensive and that surgery was a complete success. This is all I remember clearly after waking up, seeing my dad, my family next and hearing it was a success. I have been told I said some funny things, kept saying hello to everyone who walked by, and saying woohoo every few seconds. ha ha

Shortly after I was pretty lucid, I was sat up in a recliner and eventually was able to get dressed and get loaded into a wheelchair and sent home. I felt amazing, I felt so good it made me nervous. What I didn’t know is that the saying “calm before the storm” would be all too clear for me soon enough. The three days after surgery were a breeze, I was getting up to the bathroom by myself, was only take Tylenol for pain and was having virtually no distress.

Thursday changed everything… Matt came home from work and I wanted to walk down and get the mail with him as I had been doing that the days following surgery. We did that, I got back upstairs and got up to use the bathroom and felt instantly dizzy and like I was going to faint. The feeling only got worse so I got back to my chair as quickly as I could. Matt and my mom were on me like flies as I was complaining about feeling really ill. I was hot, sweaty, violently shaking and was feeling like I was going to lose consciousness. We called my ear specialist and found out Dr. Paparella had taken off to Brazil to teach the day after my surgery and wouldn’t be back until the following Wednesday. The doc we spoke with said go to the ER if things do not improve quickly…

They didn’t. Matt had to carry me to the car, my mom sat next to me and kept me awake as I kept wanting to give in and let the blackness that kept creeping into my vision take over. I was taken immediately into a private ER room, had an IV put in, needed to pee but couldn’t get up to walk so I had to be given a bed pan for the first time, and hopefully last in my lifetime. They injected me with Ativan, another drug I don’t remember, and some Benadryl. They admitted me into the hospital. I was unable to walk to the bathroom that first night so I had to use a bedside toilet. The reason I am telling you these things is because I want people to understand what this disease does to people. I want you to understand what Meniere’s takes away from it’s victims. Privacy, modestly, dignity, confidence, control.

Matt stayed with me in the hospital that night since my dad came to town and stayed at my apartment with my mom. I think he held my hand the whole night. I remember little from the first night as the combo of drugs made me drowsy. The next morning I met with my GP and she seemed to be in tears when she saw how I looked. She told me I was going to be there for a while as they figured out what was going on with me. My parents came back early the next morning so Matt could go home and get some rest. I felt guilt, embarrassment, anger, confusion, that my family had to go through this, that I was stuck here. 24 years old and admitted to the hospital, pumped full of drugs, needing to call a nurse to help me to the bathroom. I met my day nurse, Pam who I fell in love with. She made the ordeal seem a little less traumatic, her hands were soft and warm and she reassured me and my family I was in good hands.

The second full day I was in the hospital was when it was determined that this was a rare, but not unheard of, complication after surgery. We had a pretty good drug schedule going in the hospital and as long as I sat completely still I was feeling alright. The moment I moved my head, even to scoot up in my bed, it was uncomfortable and I felt myself slipping away from consciousness. I was able to walk the three feet to the toilet, but needed help. We stopped calling the nurse every time and my family helped. Just a disclaimer, I have never been overly modest, especially with my mom and dad. However, there is a difference between being comfortable with one’s body and having to ask my dad to hold my hand as I use the toilet. Having to ask him to help pull my underwear up feels like the definition of the 8th circle of hell. I am his little girl, he changed my diapers, but I am 24 now, his heart was broken seeing me in that condition.

I appreciated that my family hid a lot of what they were feeling, they remained positive while I was screaming inside, and sometimes the outside too. I would start sobbing out of nowhere. Matt would tell me our cats missed me and I would cry. I was angry, angry I couldn’t go pee by myself, angry that I had to drag that damn IV pole to the bathroom with me, angry I had a stupid heart monitor stuck to my chest – another thing I had to carry around every time I had to pee. We finally got smart and brought my pajamas with pockets to put the heart monitor in when I had to get up. My excitement over my new special pajamas was gone, I felt excitement for nothing except for blueberry muffins that the hospital had. I don’t know what it was about those damn muffins, but I feel without them I would have crazy. My mom and I cried openly, my dad and Matt cried and agonized on the inside, I could see it in their eyes – my suffering became theirs, and theirs became mine. All pain is the same. We were connected through my pain, our synapses were firing all at once, we were tired, angry, exhausted, and suffering. I would save my worst anger for Matt, we would be alone in my hotel room and I would spout angry diatribes, scream, cry, snot dripping from my face, I didn’t care, I wanted to give up, I prayed for death, or at least to wake up deaf. Being deaf means never feeling these things again. I remember saying I wished they would have killed my inner ear completely. I am sorry to Matt for that, but he let me spew, scream, kick my feet, he reminded me that someday this would be worth it. He never scolded me for having those feelings.

Matt’s mom (who is ironically a pediatric post-op recovery nurse) came and stayed with me in the hospital one night so my parents could go sleep at home and Matt could get some rest. His mom and I are extremely close. I love her like a second mother, but never thought I would need her to help me to the bathroom. In the morning, she gave me a little sponge bath and rubbed lotion on me. I remember the tears falling from my eyes. Here is this woman who six years ago didn’t know I existed and fast forward, she is here rubbing lotion on my feet, scrubbing my arm pits and helping me go pee. The world is an insane place.

Each day I would do just a little better. First I would be able to get myself in a sitting position by myself, then I would only need one hand to get to the toilet, then I would be able to shuffle back to bed by myself. It was slow, and while everyone kept telling me they could see this wonderful progress, it would irritate me. How can you say I am improving? I think that is typical, I was overwhelmed with anger and couldn’t see those small steps were improvements.

By Sunday my parents and Matt were taking me home, I think they were ready for me to be home. I was ready to be home, but in the same breathe I was terrified to go home. The hospital was safe for me. If my parents or Matt weren’t in the room for 10 minutes, a nurse could be. If I needed meds, they would be attached to an IV portal, which fed directly to a vein in my right arm, home did not afford that commodity. The toilet was three feet from my bed. It was six shuffles away from the left side of my bed. It is much farther from me at home. At the hospital it is quiet, there is no loud AC running, there is no dishwasher, there is no sink, there are no dishes being clattered, footsteps are silent, my food is brought to me and is on a tray at the perfect level where looking at it doesn’t make me dizzy, there is little stimuli, which is what my GP said I needed the most. As badly as I wanted to see, hug, kiss, love on my cats, they are into everything, jumping on me, trying to chew on my straw in my water glass, trying to get my chapstick on the floor. Thinking of all of these things made me nervous to go home. What if I had another bad attack? What if I needed someone and they weren’t able to be there right away? I was taken by complete irrational fear.

I did some work with a physical therapist who was wonderful and taught me a lot about the relationship between the body, eyes, and ears and she reassured me I would be good at home. My doc would have let me stay longer but my parents and Matt were ready for me to be home. Again, I was angry, bitter, nervous, but excited to get home. I have never felt more emotions at once in my life than in the last few weeks. I was discharged on Sunday July 15th. I cried when I had to say goodbye to my day nurse Pam. She had tears in her eyes when she hugged me and told me to take care of myself and that she hoped she wouldn’t have to see me in there again.

My first night at home was difficult. My second was a little less difficult and so on as it continues. My symptoms are still there, but much, much less. It is an ebb and flow. Stress makes things exponentially worse. So when I found out I got kicked out my class two days ago because of my attendance and hospital stay it set me back a bit. Matt went back to work yesterday, but takes a two hour lunch break, so I am only alone for about 5 hours with a two hour break during the day. Being alone is scary. I know that Matt spends more time checking the clock at work and worrying about me and I know he could be here in 5 minutes if something happened where I needed him.

I walk with a cane for some added balance. I am able to boil eggs, I made myself a bagel, I can go to the bathroom pretty much by myself, I can stand in the shower, but still need a lot of help. I have been able to feed and water the cats, which fills my heart with so much joy. My fuse is short, as is everyone’s. I am ready to be better, normal, happy, able to do a jumping jack, roll on the floor with the cats. I at least want to feel like I did before surgery, even though that was crappy – at least I could function fully some of the time. I am working on my anger, I let myself cry when it feels right, and try to make myself laugh as often as possible. I, or Matt has to remind me to smile sometimes. I am thinking about going to the grocery store tonight with Matt, I have a doctors appointment tomorrow. I am looking forward to getting out of the house, but am scared.

I am trying to trudge along. Thank you to everyone who has sent flowers, cards, well wishes, and prayers. For those of you have followed my blog and read my dads amazing updates, thank you too. To my mom, being able to take so much time to be with me is more appreciated than you will ever know. For all of the times you helped me to the bathroom, my first bath at home, all of the food, the waiting on me hand and foot, changing my dressing, helping me brush my hair, letting me cry, holding my hand, your patience, your love, I can’t say thank you enough. To dad, I know you were just opening your new clinic when all of this happened and the fact that you were able to take so much time to be with me, all of the grocery/pharmacy store runs, being the first person I saw when I woke up from surgery, your undying positive attitude, bringing me the bedside potty from work for me to feel a little safer when I came home from my hospital stay, helping your 24 year daughter to the bathroom and never making me feel weird for it, making me smile when few could, I love you so much. To Matt’s mom and family, the support, prayers, staying with me in the hospital, the compassion, the sponge bath and lotion (felt like a spa treatment), being there in the hospital the day of surgery, and raising a son who is willing, at age 26 to take on one hell of a girlfriend.

To Matt, for taking what seems like the whole summer off so far to take care of me, take me to appointments, spend yourself practically broke to make sure I have enough, your positive attitude, your smile that reminds me that this is worth it, your strong hands that carried me to the car to get me to the hospital, the hand that held mine during my hospital stay, the hand that held mine to get to the bathroom, the constant support and reassurances, helping me with my first bath and the ones after the first, being here at my beckon call when I need you, listening to me cry, scream, begging for you to end this – I can’t imagine what all of this is like for you. I love you more than you will ever know. I hope in a few months when we are riding our new bikes together we can look back at this and laugh. But I know that whatever we face in the next couple of weeks, we will face it together.

My hands are my own…

I do not consider myself a religious person, but this song has been my theme song this last week. I am never broken. This will not break me.

“Hands”

If I could tell the world just one thing
It would be that we’re all OK
And not to worry ’cause worry is wasteful
And useless in times like these
I won’t be made useless
I won’t be idle with despair
I will gather myself around my faith
For light does the darkness most fear
My hands are small, I know
But they’re not yours, they are my own
But they’re not yours, they are my own
And I am never broken
Poverty stole your golden shoes
It didn’t steal your laughter
And heartache came to visit me
But I knew it wasn’t ever after
We’ll fight, not out of spite
For someone must stand up for what’s right
‘Cause where there’s a man who has no voice
There ours shall go singing
My hands are small I know
But they’re not yours, they are my own
But they’re not yours, they are my own
I am never broken
In the end only kindness matters
In the end only kindness matters
I will get down on my knees, and I will pray
I will get down on my knees, and I will pray
I will get down on my knees, and I will pray
My hands are small I know
But they’re not yours, they are my own
But they’re not yours, they are my own
And I am never broken
My hands are small I know
But they’re not yours, they are my own
But they’re not yours, they are my own
And I am never broken
We are never broken
We are God’s eyes
God’s hands
God’s mind
We are God’s eyes
God’s hands
God’s heart
We are God’s eyes
God’s hands
God’s eyes
We are God’s hands
We are God’s hands

Photos!

Well, here are a few photos from the last week. I have some from my hospital stay as well and will put those up soon and as soon as I am up to it, I will do a full update for everyone, although my dad did a wonderful job with his updates. I am sorry I haven’t updated sooner, but I am still feeling very, very rotten.

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Almost immediately after I got home from the hospital with the pressure bandage. Man that thing was tight! Image

The next morning when we took the pressure bandage off we found 13 shiny staples and crevice where a mastoid bone once was!

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Nimbus and mom taking a snooze!

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Day 6 – the day I got home from my unexpected 3 day hospital stay – update to come! Incision is looking good!

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Day 10 – staples out! Looking interesting!

As I mentioned before as soon as I am up to it, I will do a whole post on everything that happened after surgery and the hospital stay and everything! Some hospital photos soon to come!

One Week…

One week from today I will be recovering from my Endolymphatic Sac Enhancement. I am going to keep updating as often as I can here over this week before surgery and then throughout my recovery so I can bring as much awareness about Meniere’s and the treatment plan I have chosen for myself. As always, I encourage anyone with Meniere’s to work with their physicians about what treatment works best for them, but I have gotten negative feedback in the past about surgical procedures and want to bring to the light the benefits that I have found with this surgery! I hope you all continue to follow me here throughout my recovery. I hope you are reading this and feeling well, and if you are not – you certainly are not alone.

I hope my U.S. followers have a safe and fun holiday! It is quite fitting that I am about to celebrate the independence of my country while getting ready to celebrate the independence of my life from Meniere’s!

Warrior

This blog is named Meniere’s Warrior for a reason. I consider myself a pretty humble individual, but when it comes to Meniere’s it takes a certain kind of person to deal with the daily struggles of what Meniere’s can be. I am a warrior when it comes to my Meniere’s. I feel like it is constantly trying to beat me down, and I am constantly trying to pick myself up. I wake up feeling like a prisoner in my own body. Sometimes I wish I could peel off my skin and it takes a warrior to come back from that in one piece. My family and friends say I am strong, what they do not know is that inside I am two completely different people – one is a little girl hiding under her bed, begging for what is happening to stop, the other is a warrior, willing to fight to the death for a typical life, willing to fight to the death for every opportunity that other twenty somethings have. I have my warrior days and I have my little girl days, and both are fighting for the win. My Meniere’s is my little monster living inside and we all have one in one degree or another. People fighting addiction, cancer probably have this same inner battle and are all fighting for a typical existence. I urge everyone to never stop fighting that monster, reach deep inside to the innermost part of you and pull out your warrior self. Your life should be measured by what you are willing to fight for, to die for. To all of you who are struggling to be typical, or normal, or healthy never stop fighting!

The Ups and the Downs

I would say the worst thing about Meniere’s Disease is never knowing when an attack is going to hit. I think as a victim of Meniere’s we try to blame anything and everything on an attack, ate too much salt with dinner, stressing out, not enough sleep – but the reality is sometimes an attack just hits because that is a characteristic of this disease. Over the last month that I have been so sick, I have had few ups, and many downs and sometimes it seems like a good day is a cruel joke played on me by the universe. I try to remain positive and continue to count down the days until my surgery, but it can be very difficult.

The down moments seem to muddy the good ones and that can take a hard hit on anyone mentally. If you are reading this and are having a down day, know that you are not alone! Feel free to comment!

MRI Blunder

Getting an MRI is a popular tool to use before a Meniere’s patient gets surgery. The MRI will rule out any tumors that may be pressing on the middle ear causing symptoms of Meniere’s. I have a difficult time with lie down MRI scanners so I found an open, upright MRI scanner in my area and was still terrified to get the procedure done.

My boyfriend takes me to the appointment and I get my IV port for the contrast that is used for this particular MRI and get in the machine and make strides to get comfortable. My tech strapped me in, turned up the TV mounted on the wall  (major luxury there!), and we began the exam. I have a hard time sitting still, so we had the repeat one set of scans and then the antimetic I had taken an hour prior kicked in and I began to be able to relax in my drowsy haze. We were on the third or fourth set of scans when suddenly, the room, TV, and tech room went dark.

My tech ran to me from her room like it was an episode of ER. She knew I had been nervous for the procedure and probably thought I was having a stage 5 meltdown in the darkness of the MRI scanner. I was laughing hysterically and thought the whole thing was a hoot! The tech felt terrible and it was the first time I felt normal all night after my irrational fear and hysterics over the appointment. They were unable to get the scanner back up and running so I have reschedule and finish my appointment at a later date.

What an experience and a story!

Stress Reduction

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I have been told by my ear specialist that reducing my stress will help with my Meniere’s symptoms. Everyone has their blissful moments, for me these days they seem to be few and far between with how sick I have been feeling. I just snapped this photo in hopes to remind myself that my blissful moments are sitting in my chair, Cirrus fast asleep on my lap, listening to the thunderstorm outside. The world slows down for a few seconds.

I hope my fellow Meniere’s sufferers find these tiny moments of bliss.

Loss of Control

The most difficult thing I believe a Meniere’s patient must go through is the loss of control of their life. Many of my close friends would probably say that I am a control freak. They are certainly correct. I justify this by feeling like a majority of my life is out of control. The only thing I can control in my life is my relationships, and if I lose that control I push people away because it is one less thing I have the ability to control. This may be the answer to the demise of some of my relationships, certainly since my diagnosis and firm understanding of my world. I am unable to get up and drive to the mall alone. I am dependent on the people in my life. My relationships are my lifeline. When someone lives with little independence, all they have to control is the external factors that influence their lives i.e. relationships. Losing control of one’s body is the most frightening feeling in the world. I fear going sleep, I fear waking up, I fear getting up to go the bathroom, I fear going to the grocery store because I never know when the little monster (how I refer to my Meniere’s in my head) is going to pop up. I have to work close to home because driving long distances, especially alone is difficult. I have little control of what I do, where I go.

Loss of control leads to a burning anger. I want to get in the car and go to the mall by myself, I want to jump on a plane and visit my best friend in Denver, CO where she recently moved, and I want to be able to go biking, swimming, hiking, and traveling with my boyfriend Matt. Few of those things I would feel confident doing even on a ‘good’ day.

The last month has been the most difficult for me with my Meniere’s. The anger and sadness I feel is almost unbearable at times.

If you are reading this and feel that anger or that sadness please know that you are not alone. This is a safe place to vent your anger, your sadness. Leave a comment and if you want me to keep it private (not shown publicly) please mention that and I will not approve it for the website.

Meniere’s Warrior

Welcome to my blog. The purpose of this blog is educate individuals around the world of Meniere’s Disease. I will try my best to post a balance of both facts about Meniere’s Disease including different remedies for attacks and also my personal experiences with Meniere’s Disease.

Thank you! I will introduce myself very soon.