Here I was, after years of tests, FINALLY given my diagnosis of bi-lateral Meniere's Disease. I was relieved. Relieved not to have a tumor or some other deadly disease. I was relieved and ready for acceptance, but that's not quite how it works when going through a crisis. There are several steps between denial and acceptance that I had to go through and little did I know that I wasn't through with the first step of denial.
When I first came back from the Mayo Clinic I did pretty good at accepting my fate. I followed procedure and ate a low salt diet, although I never thought salt really affected me much, but it didn't hurt to watch it more closely. I also continued to stay away from alcohol and caffeine...no problem. My tinnitus and hearing loss continued to fluctuate in both ears, but I suffered through the bad days and enjoyed the good ones. When I had my occasional vertigo attack I would take my Dramamine and sleep it off. But the more it happened and the worse my hearing got the more denial I had. On top of it, I started to develop other symptoms like neck aches and poor circulation. I couldn't wear necklaces or scarves without having facial numbness and sometimes dizziness. I started wondering if this was really Meniere's Disease. And even if it is, there's got to be a way to fix it...there's GOT TO BE a cure (despite every medical professional telling me otherwise). I can't live like this! I was determined to find a long lost cure to whatever I was going through. I started searching the internet and seeing every doctor imaginable. I visited chiropracters, homeopathic doctors, neurologists, and many other specialists. I tried massages, accupuncture, NAET treatments, and countless supplements. I was told to eat low salt diets, no sugar, no carbs, no dairy, no gluten, etc. I was being pulled in every direction but I tried anything that I could think of that might fix my symptoms. My symptoms that I were certain were not Meniere's symptoms anymore. Unfortunately, nothing really worked. But the more I searched for an answer the more stressed I became and the worse my health got. My neck was constantly stiff and my dizziness was happening almost daily. I was developing numbness in my limbs and tingling down my back. I was finding it difficult to move, work or even get out of bed. I was starting to get really scared. I soon found myself bouncing around between the first four stages of grief. I was still denying that this was Meniere's Disease. I was angry that this was happening to me. What did I do to deserve this? When the bargaining set in I kept making promises that were impossible to follow through with. If someone could just tell me why this was happening I'll do whatever it takes to stop it. I'll stop eating sugar. I'll cut out the gluten from my diet. I'll stay away from salt. All of these things that I had tried before (without much success) but I wanted someone to make a deal with me. I wanted someone to say with certainty if I cut "X" out of my diet I would feel good again. But no one could make these "deals" with me. The more I came to this realization the more angry and stressed I got. Soon depression set in. And it was ugly.
I hate to go into the details here, mostly because I don't like "reliving" that horrible point in my life but in hopes to help someone reading I'll briefly talk about it. My depression was dark and lonely. I decided that there was nothing that could help me and I wanted it all to end. I wanted to end the constant buzzing, roaring in my ears. End the aches and pains. End the uncontrollable vertigo episodes. End the nausea and vomiting and headaches. I just wanted it all to end. And as far as I knew there was only one way to do that. Luckily, I never followed through with any crazy thoughts. It was a long, ugly depression, but I was lucky enough to have a husband who stood beside me through it all. He saw that this had gone far enough and he was going to do everything he could to get me better. He got me the help I needed, including counseling so I could learn to deal with the daily episodes. Once I was able to figure out that the attacks weren't the end of the world and that I could ride them out, I was able to manage them and basically shorten them. Soon I was having less episodes, and the ones I were having weren't lasting as long. I had developed tools to deal with suffering I was going through. I started doing yoga and meditating. I was feeling a little better and ready to end this never ending cycle. I soon realized that I had the tools all along to make me feel better. I was done searching for the magic cure out there. I had decided that I had seen every kind of doctor and tried every kind of pill and supplement out there. I was FINALLY ready to accept this prognosis. I have bi-lateral Meniere's Disease and I'm going to deal with it the best that I can. I can do this!
You can do this too! If you are going through a bad day, just know that there is a good day around the corner. My plan is to be able to share my tools to get through the attacks and talk about what works for me and what doesn't. I would love to hear your story too, and find out your tips. Hang in there! We'll get through this together!
Much Love,
Shanon
Tuesday, May 31, 2011
Monday, May 30, 2011
Five Stages of Grief
Well, I've asked you to share your stories here on the blog, so I thought it would only be appropriate that I share mine. Sorry if I get too wordy but hopefully those of you who have been there will understand...
They say that there are five developmental stages of grief that one goes through when dealing with crisis:
1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance
When I was diagnosed with bi-lateral Meniere's Disease in January of 2007 I had no idea that I was going to suffer through these stages over the next four (plus) years of my life.
By now, we all know what Meniere's Disease is and how the debilitating illness can nearly ruin your life. How the anxiety and worry of another attack can leave a person living in fear day after day. Going through all this stress and sickness, it's no surprise that this crisis will make you go through the five stages of grief.
Step 1: Denial - I was actually diagnose with Meniere's Disease in the right ear several years before I started to develop bi-lateral (both ears) Meniere's Disease. This was relatively easy to deal with (in comparison) for me. Now don't get me wrong, Meniere's Disease is no picnic whether it's in one ear or both, and for every sufferer it's different. Trust me, I've read about many unilateral sufferers of Meniere's Disease that go through the debilitating symptoms. But for me it was not that big of a deal. For the most part if I followed the low salt, no alcohol or caffeine diet I was relatively fine. I still suffered from minor hearing loss and tinnitus in the right ear and the occasional, 1 maybe 2 vertigo episodes a year. For the most part it was very manageable. So when I started to develop hearing loss and tinnitus in my left ear around 2005 the denial set in. I actually thought that maybe I was imagining the ringing in my ear, or that it would just go away after awhile. But of course it didn't and I soon found myself visiting my audiologist who originally diagnosed me with Meniere's Disease in my right ear so many years before. Needless to say neither one of us were very happy to see each other again under the circumstances. After several audio tests and discussing my new symptoms, he was certain I was showing signs of bi-lateral Meniere's Disease, but even he was having feelings of denial. Since Meniere's in one ear is a very rare condition and usually happens in older patients, bi-lateral Meniere's is EXTREMELY rare and almost NEVER happens in young patients. I was only 27 years-old at the time...luck me! So, while he knew what his prognosis was he though it would be best if I visited an ear specialist in Kansas City (about an hour away). Here I went through many of the same audio tests and questions about my symptoms. As well as, cat scans, MRI's and lots of blood work to rule out tumors, autoimmune disorders, Lyme's disease, AIDS, bacterial infections, etc. You name it, I was probably tested for it. After all the tests and scans came back normal, the only conclusion left was bi-lateral Meniere's Disease. But how could this be? How could an otherwise healthy young woman have this awful condition? Now both of my doctors were puzzled and still hesitant to say with certainty that this was in fact bi-lateral Meniere's Disease. After more than a year of testing and different medications my doctors decided to recommend me to the Mayo Clinic in Rochester Minnesota. It was there in January of 2007 where I spent 2 days with numerous doctors performing test after test that I was FINALLY sent home with a definitive diagnosis of bi-lateral Meniere's Disease accompanied with migraine headaches. In many ways I was devastated, but for the most part I was relieved. I finally had a diagnosis and I thought I could accept this condition and move on with my life. Or so I thought. You see, it's not so easy to accept something like this, and little did I know that I was still going through the first step. Denial. I had a long bumpy road ahead of me...
Tomorrow I will continue on my road to acceptance and hope to hear more of your stories!
Today I'm having a pretty good day. So far this morning I've done some yoga and meditated on the back deck. Had my breakfast and spent some time working in the office. Up next, I'll be spending some time in my art studio. I love good days! :)
Much Love,
Shanon
They say that there are five developmental stages of grief that one goes through when dealing with crisis:
1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance
When I was diagnosed with bi-lateral Meniere's Disease in January of 2007 I had no idea that I was going to suffer through these stages over the next four (plus) years of my life.
By now, we all know what Meniere's Disease is and how the debilitating illness can nearly ruin your life. How the anxiety and worry of another attack can leave a person living in fear day after day. Going through all this stress and sickness, it's no surprise that this crisis will make you go through the five stages of grief.
Step 1: Denial - I was actually diagnose with Meniere's Disease in the right ear several years before I started to develop bi-lateral (both ears) Meniere's Disease. This was relatively easy to deal with (in comparison) for me. Now don't get me wrong, Meniere's Disease is no picnic whether it's in one ear or both, and for every sufferer it's different. Trust me, I've read about many unilateral sufferers of Meniere's Disease that go through the debilitating symptoms. But for me it was not that big of a deal. For the most part if I followed the low salt, no alcohol or caffeine diet I was relatively fine. I still suffered from minor hearing loss and tinnitus in the right ear and the occasional, 1 maybe 2 vertigo episodes a year. For the most part it was very manageable. So when I started to develop hearing loss and tinnitus in my left ear around 2005 the denial set in. I actually thought that maybe I was imagining the ringing in my ear, or that it would just go away after awhile. But of course it didn't and I soon found myself visiting my audiologist who originally diagnosed me with Meniere's Disease in my right ear so many years before. Needless to say neither one of us were very happy to see each other again under the circumstances. After several audio tests and discussing my new symptoms, he was certain I was showing signs of bi-lateral Meniere's Disease, but even he was having feelings of denial. Since Meniere's in one ear is a very rare condition and usually happens in older patients, bi-lateral Meniere's is EXTREMELY rare and almost NEVER happens in young patients. I was only 27 years-old at the time...luck me! So, while he knew what his prognosis was he though it would be best if I visited an ear specialist in Kansas City (about an hour away). Here I went through many of the same audio tests and questions about my symptoms. As well as, cat scans, MRI's and lots of blood work to rule out tumors, autoimmune disorders, Lyme's disease, AIDS, bacterial infections, etc. You name it, I was probably tested for it. After all the tests and scans came back normal, the only conclusion left was bi-lateral Meniere's Disease. But how could this be? How could an otherwise healthy young woman have this awful condition? Now both of my doctors were puzzled and still hesitant to say with certainty that this was in fact bi-lateral Meniere's Disease. After more than a year of testing and different medications my doctors decided to recommend me to the Mayo Clinic in Rochester Minnesota. It was there in January of 2007 where I spent 2 days with numerous doctors performing test after test that I was FINALLY sent home with a definitive diagnosis of bi-lateral Meniere's Disease accompanied with migraine headaches. In many ways I was devastated, but for the most part I was relieved. I finally had a diagnosis and I thought I could accept this condition and move on with my life. Or so I thought. You see, it's not so easy to accept something like this, and little did I know that I was still going through the first step. Denial. I had a long bumpy road ahead of me...
Tomorrow I will continue on my road to acceptance and hope to hear more of your stories!
Today I'm having a pretty good day. So far this morning I've done some yoga and meditated on the back deck. Had my breakfast and spent some time working in the office. Up next, I'll be spending some time in my art studio. I love good days! :)
Much Love,
Shanon
Friday, May 27, 2011
Dizzy Days
Yesterday I gave the "definition" of what Meniere's Disease is. Today you get to experience it.
If you actually want to know what it feels like to have a vertigo episode sit in an office chair or stand in an open space and start spinning. Keep spinning. Spin until you can't spin anymore, and then stop. The world around you is still spinning but you have not. More than likely you will fall to the ground and start feeling nauseous. While this is happening imagine that your ears are plugged so that your hearing is impaired and there is extremely loud ringing noises in your ears. Luckily for you, it will all be over soon and you will feel back to normal again after a few minutes. But imagine you didn't know when that awful feeling was going to stop. Could be minutes or it could be days.
Honestly, I really don't recommend you do the exercise above...it's not fun, and I don't wish this feeling on anyone, even if you do it to yourself. If you try it, I am not responsible for the outcome. Please don't cry to me if you've fallen and can't get up! Instead, I recommend you watch this short video. It is a great interpretation of what a day in the life of a Meniere's patient can feel like.
By the way, yesterday I had audiologist appointment and my hearing is still SLOWLY coming back up in my right ear! Not so much in my left though...still nearly deaf on that side. Some exciting news though! I've talked to him about starting a Meniere's support group and he is on board to help me make this happen. I'm so excited! Details to come soon!
If you actually want to know what it feels like to have a vertigo episode sit in an office chair or stand in an open space and start spinning. Keep spinning. Spin until you can't spin anymore, and then stop. The world around you is still spinning but you have not. More than likely you will fall to the ground and start feeling nauseous. While this is happening imagine that your ears are plugged so that your hearing is impaired and there is extremely loud ringing noises in your ears. Luckily for you, it will all be over soon and you will feel back to normal again after a few minutes. But imagine you didn't know when that awful feeling was going to stop. Could be minutes or it could be days.
Honestly, I really don't recommend you do the exercise above...it's not fun, and I don't wish this feeling on anyone, even if you do it to yourself. If you try it, I am not responsible for the outcome. Please don't cry to me if you've fallen and can't get up! Instead, I recommend you watch this short video. It is a great interpretation of what a day in the life of a Meniere's patient can feel like.
By the way, yesterday I had audiologist appointment and my hearing is still SLOWLY coming back up in my right ear! Not so much in my left though...still nearly deaf on that side. Some exciting news though! I've talked to him about starting a Meniere's support group and he is on board to help me make this happen. I'm so excited! Details to come soon!
Thursday, May 26, 2011
So, what IS Meniere's disease?
Some of you may be wondering what IS Meniere's disease anyways? Maybe you know someone who has it but you don't really understand it. Or maybe you yourself were recently diagnosed but are trying to get more information. Well, it's a tough one to explain, but here goes...
The medical field will explain it as a vestibular inner ear disorder that causes hearing loss and disrupts balance. A patient with Meniere's disease however, will explain it as hell.
Symptoms include a fullness feeling in the ear(s), tinnitus (ringing, humming, buzzing and/or roaring sound), hearing loss (usually low tones) and vertigo (spinning sensation or dizziness). These vertigo episodes, sometimes referred to as attacks, can occur without warning and can be debilitating. Along with the spinning sensation a person may develop a headache and will likely develop nausea to the extent of possibly vomiting. An episode can last anywhere from a few minutes, to several hours, to even days. And even once it's over your body feels like it's been hit by a truck probably because of all the stress and muscle tension developed to try and keep your world from spinning. Unfortunately, days later once you've FINALLY recovered there is possibly another attack just around the corner. Waiting, to go through the entire process all over again. Because these episodes usually have no warning many patients develop anxiety and fear of when the next attack will hit. Living in fear...day after day. As you may have guessed, depression often times sets in as well.
To top it all off there is no cure for the disease. Doctor's recommend a low salt diet, and to avoid alcohol and caffeine to help control the symptoms. But for some it works and for others it doesn't. Treatments can include steroids, water pills or diuretics but sometimes they work and sometimes they don't. Various prescription medications can be used such as Valium or Antivert to take during a vertigo attacks, or Promethazine to help control the nausea. But again they work for some but not for others. Sometimes you just have to wait it out. Every Meniere's patient is different and every episode can be different. The one thing that's for sure is that it can be hell.
But as a person living with Meniere's disease...who's been through hell and back with every episode, I can say there's a way to deal with it. Every day is different. Some are good and some are bad but it's all about taking one day at a time. For me, the last five days were bad. But today is a good day. And that's all that matters right now.
I hope you're having a good day!
Much Love,
Shanon
The medical field will explain it as a vestibular inner ear disorder that causes hearing loss and disrupts balance. A patient with Meniere's disease however, will explain it as hell.
Symptoms include a fullness feeling in the ear(s), tinnitus (ringing, humming, buzzing and/or roaring sound), hearing loss (usually low tones) and vertigo (spinning sensation or dizziness). These vertigo episodes, sometimes referred to as attacks, can occur without warning and can be debilitating. Along with the spinning sensation a person may develop a headache and will likely develop nausea to the extent of possibly vomiting. An episode can last anywhere from a few minutes, to several hours, to even days. And even once it's over your body feels like it's been hit by a truck probably because of all the stress and muscle tension developed to try and keep your world from spinning. Unfortunately, days later once you've FINALLY recovered there is possibly another attack just around the corner. Waiting, to go through the entire process all over again. Because these episodes usually have no warning many patients develop anxiety and fear of when the next attack will hit. Living in fear...day after day. As you may have guessed, depression often times sets in as well.
To top it all off there is no cure for the disease. Doctor's recommend a low salt diet, and to avoid alcohol and caffeine to help control the symptoms. But for some it works and for others it doesn't. Treatments can include steroids, water pills or diuretics but sometimes they work and sometimes they don't. Various prescription medications can be used such as Valium or Antivert to take during a vertigo attacks, or Promethazine to help control the nausea. But again they work for some but not for others. Sometimes you just have to wait it out. Every Meniere's patient is different and every episode can be different. The one thing that's for sure is that it can be hell.
But as a person living with Meniere's disease...who's been through hell and back with every episode, I can say there's a way to deal with it. Every day is different. Some are good and some are bad but it's all about taking one day at a time. For me, the last five days were bad. But today is a good day. And that's all that matters right now.
I hope you're having a good day!
Much Love,
Shanon
Wednesday, May 25, 2011
Hello, and welcome!
My name is Shanon. I'm a 32 year old female living in Topeka, Kansas trying to do the best that I can, just like everyone else. I'm a wife, a mom to two furry kids, an artist and a graphic designer. I love nature and being outdoors, camping, hiking, taking pictures, reading (a new found love), cooking, baking and traveling. I have a life. But I also have Meniere's Disease. Together it can be complicated. But I take one day at a time and make it work.
If you, or someone you know has Meniere's Disease I hope you find this blog helpful. My ultimate goal in doing this to to help you, and to educate others on this condition. If you have a question, feel free to ask. If you want to share your story, please do so! One of the worst feelings Meniere's Disease can create is isolation. Not only can you feel like you're the only one out there with this condition, but there's the feeling of isolation from your friends, family and co-workers because you can't hear or because they don't understand what you're going through. It can be a lonely feeling, but it doesn't have to be. Please join me on my journey and we'll get through this thing together.
Much Love,
Shanon
If you, or someone you know has Meniere's Disease I hope you find this blog helpful. My ultimate goal in doing this to to help you, and to educate others on this condition. If you have a question, feel free to ask. If you want to share your story, please do so! One of the worst feelings Meniere's Disease can create is isolation. Not only can you feel like you're the only one out there with this condition, but there's the feeling of isolation from your friends, family and co-workers because you can't hear or because they don't understand what you're going through. It can be a lonely feeling, but it doesn't have to be. Please join me on my journey and we'll get through this thing together.
Much Love,
Shanon
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