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Showing posts from 2017

What I Want You to Know About Me and My Life with Meniere's Disease

If you know someone with Meniere's disease, you should read this. If you know me, and are a part of my life, then you should definitely read this.

1. It's completely fine to ask me about anything related to my condition! I would rather have you ask than make assumptions. MD is not a sensitive subject to me, and I'm happy to fill in the gaps!

2. My condition is permanent. My hearing loss is permanent. Please don't ask me a year from now if my ear is all better - it won't be. There's no cure for MD, and this is something I'm stuck with until there is one.

3. If/when I say I can't hear you, I mean it. Please accommodate to that, and speak up, or write or type what you need to say to me. Or, if you know Finnish or American sign language, you can sign to me ;)

4. When I have vertigo, please know that it's quite debilitating. If I ask you to drive, it literally means my world is spinning out of control and you do not want me operating heavy machinery. My…

Meniere's Disease Symptoms

Meniere's disease is different with everyone, that much we all know. However, there are a variety of symptoms that everyone with MD experiences at least sometimes. Below I have listed common symptoms that occur before, during and after attacks / between attacks, and I have underlined everything that I am experiencing during those stages on a regular basis. All of the information I have gathered in this post, can be found from Vestibular Disorders Association's (VEDA) website, which is an excellent source of information. This post is not sponsored.

balance disturbancedizziness, lightheadednessheadache, increased ear pressurehearing loss or tinnitus increasesound sensitivityvague feeling of uneasiness DURING AN ATTACK: spontaneous, violent vertigofluctuating hearing lossear fullness (aural fullness) and/or tinnitusanxiety, feardiarrheablurry vision or eye jerkingnausea and vomitingcold sweat, palpitations or rapid pulsetrembling AFTER AN ATTACK / BETWEEN ATTACKS: …

My First Tattoo

So, I got inked. And I love it!
I don't take tattoos lightly. When I was a teenager, I was sure I would get my first tattoo the second I turned eighteen. Good thing that didn't happen... Tattoos are, as you know, permanent. Before I stumbled upon sign language tattoos I had never found anything that I would permanently want inked on my skin. And when I found this design, I wanted to think it through. Would I regret it? Is it a bad idea? 
I'm not opposed to beautiful tattoos that people get just because. To each their own. However, I decided early on that if I was ever going to get a tattoo, it would have to mean something, and it would have to be a personal decision, and there for myself, not for anyone else. It would have to be in a place where I can show it, but a place I can also cover up if needed. No way was I going to get a tattoo that would insult somebody in any way. 
So, why this tattoo? I'm a very different person from who I was a year ago. With my progressi…

General Update

Hey guys!

Guess what?! I FINISHED MY THESIS! The official return date is Tuesday the 16th, and I have a few corrections to make before that, but basically I'm done! I'M SO DONE! I feel so incredibly good right now. You wouldn't believe the permanent smile on my face today when I typed the last words... Oh my goodness, what a load off!

Needless to say, my life will calm down remarkably now that I'm done with my thesis. I have some plans for future posts and will hopefully finally sit down and film a video for you guys, too. I will be going on a three-week trip starting on June 25, and I want to get things done before that. I'm sorry for having been MIA for so long. Is anyone there still reading this blog? :D

I really want to get back to regular posting, and soon you can expect the following:

Dealing with tinnitusSomething super exciting (for me at least) that I will share with you hopefully next week!Hearing aid updateMy Story with Meniere's Disease -video Sound …

Have You Just Been Diagnosed with Meniere's Disease? Read This.

I got sick five years ago and was fortunate enough to have a mother who's an interpreter and knows a thing or do about everything ear-related. I also had a good doctor and did my own research about Meniere's disease online. However, back then it never occurred to me to look for support in social media. I never read blogs about Meniere's disease or searched for any groups or networks. I was pretty much alone with my disease, but I usually prefer it that way. I'm weird and isolated like that.

I know that doesn't work for most people.

Here are some things you can do if you've recently been diagnosed with Meniere's disease, or if it's something that you might have and you just haven't been diagnosed yet.

Do your research. Meniere's disease symptoms also fit some other conditions, so make sure you know what is happening in your body. This way you can provide your doctor valuable information that can help him help you. If/when you get your diagnosis, k…

What I Can't Do With Meniere's Disease

Over the years I've come to some realisations about things I'm no longer able to do due to having Meniere's disease. Before you read any further, please remind yourself that this disease is different with everyone, and what's not working for me might be working for someone else. This post is also not me complaining about things I've had to give up. I'm just presenting some facts here :)

Rollercoasters. Ah, I used to love going to amusement parks and riding rollercoasters and other rides. I LOVE amusement parks. Now, unfortunately, my balance goes way off if I get on a ride, so I no longer have to spend crazy amounts of money on those wrist bands...

Walk down the stairs without holding onto the banister. I still have good days when I can just run down the stairs with no problems, but most of the time I need to hold onto something. If it's dark, I definitely have to be careful on the stairs.

Function well without proper sleep. I need my sleep, I really do, or I …

Hearing Aid Update

I have been living with a hearing aid for about a month and a half now, so I thought I'd give you guys a little update on how everything is going.

It's going pretty damn well!

When I first got my hearing aid the ear piece was a very general one - one that could fit into anyone's ear. It worked fine, but it was itchy from time to time. At first I didn't notice too big of a difference with or without the hearing aid on, only some certain noises and stuff. It took a few weeks for my brain to adapt enough for me to be able to notice how my hearing drops when I take the hearing aid out. I also noticed how it helps with my tinnitus :)

Almost a couple of weeks ago I got my own individual ear piece, and was introduced to whole new sounds! I didn't know there could be that big of a difference between the general ear piece and the individual one! I hear so much better now. The ear piece fits my ear perfectly (as it should, of course), and doesn't itch. Plus it's pre…

Why Meniere's Disease Made My Life Better

Let me just say this: Meniere's disease sucks. It really does, but there's nothing I can do about the fact that I have it. I can't make it go away, although I can manage it. There's no known cause for it, so I can't tell you what to do so you won't get it. In some cases it's hereditary, and in some cases a person's just shit out of luck. That's the wording my co-worker once used. She asked me, "So does it run in your family or were you just shit out of luck?" I was just shit out of luck. But... if I can't make it go away, why wouldn't I just try to live with it with the best of my ability?

Meniere's disease has made my life better in many ways. I could live without the dizziness and especially the vertigo (which I don't get a lot anymore, thank goodness), and I hate it when I get pressure in my ear. But when it comes to my hearing loss, I find it the least of my worries. I got used to the idea of a hearing aid before I got …

Life Update

Hey guys! Sorry for not posting for a while. Everything else kinda got in the way... so, I wanted to take this chance to update you on what's been going on lately :)

I've now been living with my hearing aid for about two weeks. The more days pass the more perks I'm noticing, so there's no way I would give it up anymore. However, I have been experiencing ear pain (most likely not because of the hearing aid), and it's stressing me out. My ears are so messed up, I feel like there's always something wrong with them. I have an appointment to see my audiologist in a couple of weeks, but I'll call her this week to see if I need to get another appointment with a doctor, too. I'll let you know what happens.

School is also taking up a lot of my energy right now. My thesis alone gives me a headache. I'm getting more and more excited about graduation! I should graduate in May or June, depending on when I can hand in my thesis. The writing process is slow at the …

I Got A Hearing Aid!

Last summer I went to get my hearing checked after a couple of years, and it turned out my left ear had gone worse. It had happened so gradually I hadn't even noticed. I had my doubts, but never really believed it until I saw my audiogram on paper. I've now lost the high pitched noises, like bird singing, and struggle to hear people in crowds. After the results last summer I went to see an ENT, and told him I need a hearing aid. He, at first, said I was a borderline case, and doubted whether I needed a hearing aid since my right ear was perfectly fine. But then he took a look at my previous audiograms and figured if my hearing continued to deteriorate at this speed, it's better to get a hearing aid sooner rather than later, and so he put me down for one. Since I wasn't an acute case, I needed to wait about six months to get to my actual hearing aid appointment.

That appointment was on the last day of January. Since I still had an infection in both of my ears, we were u…

My Meniere's Triggers

I consider myself to be very fortunate with my own condition at the moment. I rarely get vertigo attacks, I'd say once a year. I definitely don't take this for granted, and credit medication (Betaserc) and certain lifestyle changes for doing well. However, I do have triggers that make me feel worse. Please note, that by saying these factors trigger my Meniere's, I mean they temporarily make my symptoms worse, they do not necessarily cause an attack.

Consuming large amounts of alcohol is simply not an option for me anymore. I learned my lesson from my very first vertigo attack ever, which, to this day, is the worst I've ever felt in my entire life, and was caused by alcohol. After realizing that alcohol was a trigger for me, I gave it up for a whole year. I've never been a big drinker anyway, so it wasn't a big deal. After that year I started testing my limits, allowing myself a glass of wine every now and then. I now drink less than I did before I got Me…

Talking About Illnesses

How many of you are comfortable talking about your illnesses with other people? In Finland people seem to have this weird habit of listing everything that's wrong with them, and then we have to top other people's problems. Hahaha, I have more issues than you! I know, we're a weird people.

I'd rather keep my mouth shut. I only tell people about my Meniere's disease if one or more of the following conditions are met:
It's somehow relevant to the situation at handI can offer information important to the other person because of my diseaseIt somehow affects our interaction at the momentThey askIt comes up naturally in a conversation, never forced 
I'm not ashamed to have Meniere's disease, nor will I ever apologize for it. I can't help that I have it. But I'm not comfortable talking about it just because. I'm not telling you about my disease to get sympathy points from you, because frankly, I don't need them. I'm also not seeking any atten…

The Power of Positivity

I have recently realized that I don't deal so well with major changes in my life. If I'm already stressed, even small changes give me major anxiety. For example, our family had three cars break down during one week in December. I did not take it too well :D My mom always tells me I have a tendency to see the worst in every situation. I'm working on that... Being negative and anxious takes everything out of me. I get exhausted in a matter of minutes, because of how consuming it is to be angry or sad about something I simply have no control over. Not being able to do anything about whatever it is that's bothering me just makes me more anxious.

So what's the point?

I don't want you to think of me as someone who's just plain telling you to stop feeling sad or anxious and start feeling happy. I have absolutely no credentials to do anything of the sort, and I think we all know that anyone who's saying they just stopped being negative and started being positiv…

How Others React To My Meniere's Disease

I had never heard of Meniere's disease before I found out I have it, so it wasn't really realistic for me to expect others to know what was going on with me. When I started telling people I have MD, the most common replies were:
"What's that?"
"A what disease?"
"Ooh, what a cool name!"

Yep. My chronic illness does have a cool name, I do agree.

It's sad how Meniere's is so little known. My friends were interested in learning about it, but since my disease is pretty well under control and it doesn't have a direct affect on anyone besides myself, they tend to forget about it. They'll ask things like:
"What was the name of that condition you have, again?"
"You had some ear thing, right?"
"Are your ears all better now?"

I don't take it personally if someone I know forgets the name of my disease or if someone remembers the name but doesn't remember wha…

The Perks of Being Hard of Hearing

My hearing has deteriorated so slowly that I never even realized it was happening. I knew it was happening, but as far as I'm concerned I hear just as well as I did five years ago. But... I really don't. I mean, I really don't. Here's a picture of my very first audiogram back in 2012 when I'd never heard of Meniere's disease compared to an audiogram from July of 2016:

The truth is, even after the latest audiogram I didn't feel as hard of hearing as I am on paper. My right ear being healthy naturally has a lot to do with why I feel that way, but still. I never noticed how bad my left ear had gotten. Every now and then I would pay attention to it and take advantage of certain aspects of my hearing loss, but I never thought about it any further. You know what I mean?
I'm getting a hearing aid for my left ear sometime this spring, which ought to make things a bit easier for me, since I don't do so well in crowds, classrooms, and other noisy environments…

Raise Awareness on Meniere's Disease!

I addressed this matter on my other blog a while back, but what better place to do that again than on this blog!

I think everyone with Meniere's disease can agree that there isn't enough information out there and way little research is being done. So many people have Meniere's disease, and yet nobody talks about it. Why is that? Why isn't Meniere's disease considered important enough to make it more known? Our curse is that this disease is invisible. Maybe if we were all walking around with our heads bandaged up, people would take it more seriously.

There is a petition online started by Judy McNamara Tripp to get Bono and U2 help us raise awareness. The petition states the following:

We are requesting that you would consider one of two possible options: First, creation of a simple (filmed) statement before you sing your song, “Vertigo” during one of your concerts, mentioning the need for a cure, something along the lines of: “We need to find a cure for the millions…

Who Am I?

Launching a new blog is always exciting. I love blogging, and have been doing it since late 2010. If you want to check out my lifestyle/travel blog, click here. I have shared thoughts about my Meniere's disease over there, too, but decided creating a new blog dedicated to the subject made more sense, because I have a lot of thoughts and things to say. I'm excited about this blog, and looking forward to really getting it started. So, naturally, I want you guys to get to know me.

My name is Iira, and I'm a 27-year-old business student from Finland. I'm on my last year of studies, and to be honest, I have no idea what I will do after graduation. I'm pretty good at winging it... eyeliner, and life. I currently work as a personal assistant and hope to move abroad at some point. I love traveling and writing. Simple things make me happy. Besides my business studies I've taken on Finnish sign language classes, and I love it! I'm also independently studying American…

What is Menieresstrong?

Hi, everyone, and welcome to Menieresstrong! If you clicked here from my personal blog, then you probably already know what this new blog is about. If you just randomly happened to stumble upon here, let me bring you up to date!

I have had Menieres's disease since 2012. I follow many Meniere's associated sites and groups online and although it makes me happy whenever I find a new site (I feel there really aren't that many!), most of the time I end up disappointed a little because of all the negativity. The thing about Meniere's is that it's never the same between two individuals. I'm currently doing really well with my own condition, but I realize there are a lot of people out there who suffer from this disease and its symptoms on a daily basis and never get a chance to breathe in between. However, I think people should hear the positive side of life with Meniere's as well. I would never judge anyone by what they're telling about their condition, and I…