Double Ear Infection

If you haven't figured it out by now, if I don't post for awhile it usually means I'm having several really good days, or several really bad days. Well, it's been over 2 weeks since my last post and unfortunately it's because I've had many bad days BUT, this time my bad days weren't ENTIRELY connected to meniere's disease. I've had a HORRIBLE cold. Coughing, sneezing, headaches and congestion. You know...the common cold. No big deal. I treated it as best I could with over the counter meds...except of course, trying to avoid the ones that don't mix well with meniere's disease such as anything containing aspirin, alcohol or caffeine. I drank lots of fluids and got plenty of rest...but I only felt like I was getting worse! It was awful. I'm not big on going to the doctor (I've been there enough because of my condition) so I was avoiding it as long as I could. But by the time day 10 of sleepless nights, endless coughing and a runny nose came along and there didn't seem to be an end in sight I gave in and went to the doctors. For the most part my diagnosis was no big surprise, I found out I was finishing up with an upper respiratory infection with post-nasal drip. Something that did surprise me however was that I had a double ear infection! What?! How could someone not know they have an ear infection, let alone a double ear ear infection? I can answer that question with two words: Bilateral Meniere's. You see I already suffer from the common symptoms of an ear infection on a daily basis.

Ear pain: check
Popping/ringing in the ear(s): check
Fullness feeling in the ear(s): check
Trouble hearing: check
Balance problems/dizziness & vertigo: check

These symptoms are common for me on any given day! I had no idea that I was suffering from a double ear infection. I just thought my cold was triggering some meniere's episodes. BUT in actuality my ears were all kinds of angry. With meniere's disease the inner ear is what is effected. But with an ear infection it's the middle ear the suffers. I had BOTH the middle AND inner ear mad in BOTH ears. I'm kinda surprised I was doing as well as I did through this whole thing! :)

Thankfully, now that we are treating the infections and cough I'm on my way to better days... I hope! It's still a slow healing process, and it's been a rough couple of weeks but I think I'm FINALLY starting to feel better. Back to my "normal" meniere's self...with just my inner ears messed up. :)

Hope you are all staying healthy and dizzy-free.

Much Love,
Shanon

Exercise

We all know that exercise is important, but for someone with Meniere's Disease it can seem almost impossible to get a good workout in when it's a challenge just to walk a straight line at times. Ever since I started having daily vertigo, or at the very least dizzy attacks every day I've been proud of myself for just being able to stand up on my own, so working out has just been out of the question for me. Once the attacks started to spread out a bit and I was able to enjoy a dizzy-free day here and there, I started doing morning yoga. This really helped with my balance and coordination. I could always tell if I missed a yoga session or two because I would start to feel a bit more wobbly. Now don't get me wrong, it never made my dizziness 100% go away, but it did help. Unfortunately, I've stopped doing it again. I used to greet each day on my back deck with some morning stretches and a sun salutation or two. I don't know if it is the cold morning air or what, but for some reason I stopped.

Well, this morning I realized I was in a rut. I needed to change things up a bit. It's not just the yoga that's good for me....it's exercise. It's moving. I know that it's not good for me to stay in one position too long or I start to feel dizzy. That's why I'm more dizzy in the mornings....because I've been lying down all night. And that's why I can't work on a computer for several hours at a time...or I will trigger a dizzy episode. I need to move! So that's what I did.

This morning I went for a walk! It was scary at first knowing that I could get dizzy at any time so far from home but I wouldn't take that as an excuse to keep me cooped up at home. I took my phone with me in case I found myself dizzy on the side of the road and needed to call for help, and I took it slow. I didn't go far but I went far enough to know that I enjoyed it. I felt a little wobbly by the time I made it back home but overall I could tell it was good for me. It was good to get out of the house for a bit. It was good to teach my ears balance. It was good to get the blood flowing. I'm not sure it will become a daily routine and obviously it won't happen on the days that I'm suffering from extreme dizziness or vertigo, but I think it will happen again. Actually I know it will happen again. I love the idea of a morning walk.




Besides, I have some really great walking buddies who love the idea too! ;)

Much Love,
Shanon

tired

tired of the ringing. the buzzing, humming, popping. tired of the noise. tired of reading lips and saying "what?" when i didn't catch it all. tired of missing out on conversations. the tv's on but i can't hear it. i turn it up but it's just noise. understanding is impossible. everything and everyone sounds like charlie brown's teacher... wagh, wagh, wagh, wagh. the fluids in my ears are heavy. sitting up. standing. turning my head. it's all a struggle but i smile. i smile through it all. everyday i put on a brave face. i want to have a good day. but eventually i can't anymore. eventually i cry. i cry. i cry. i don't want to be dizzy anymore. i want to go shopping for new fall boots. i want to go on a bicycle ride. i want to hear christmas music. i want to drink a pumpkin spice latte on the back of a hay rack ride. i want to call my sister in indiana. i want to drive again, with the windows down singing to the radio. i want to go on a walk with my dogs and not cringe every time they bark. i want to hike, and jump and play. i don't want to lie down anymore. i'm tired. tired of this struggle. tired of this life. tired.

Jennifer's "My Life with Meniere's" story (part 1)

Yes, I know I just shared a "My Life with Meniere's" story with you only a couple of days ago, but I felt it was important to get this one in today. Today our guest blogger is going in for surgery to hopefully improve her Meniere's condition. Please read her heartfelt story below and be thinking of her today and in the days ahead while she recovers.

Thank you for allowing me to share my Meniere's story. My name is Jennifer. I am a 40 year old married mother of four Even though Meniere's patients all have the same disease it can manifest itself in different ways and differing severity. For any of you who don't know, Meniere's is a fluid imbalance in the inner that can cause vertigo, ocular disturbances, tinnitus, pressure in the affected ear, loss of balance, loss of hearing, brain fog, slurred speech and falls. Telling someone you are constantly dizzy is putting it mildly. When people ask me what it is like I tell them to go outside, close their eyes, put their arms out and spin around as fast as they can for 20 seconds, then try to walk a straight line without falling down while reciting the alphabet backwards.

It usually takes several years and countless doctors to get Meniere's diagnosed. And even at that, there is very little they can do for it. There are drugs and surgeries to manage the symptoms, but there is no cure. Then there is always the chance that it will go bilateral. Of course if your Meniere's is severe enough, like mine, you are not able to drive and spend a lot of time in bed or on the couch...alone. This leads to depression and anxiety. i get nervous when I have to go out in public. I am afraid of falling, even though I use a cane, or of being thought to be drunk. I have had to explain to all my kids' friends parents that I am not drunk, that I don't really drive and that it is difficult for me to have other kids at my house because I can barely take care of myself. Luckily, my kids have great friends and their parents all understand. I am going to owe a lot of sleep-overs when I am better.

I began having symptoms about 12 years ago. It started with some vertigo every few months, so I didn't think much of it. I put it down to the stress of my job and not eating right. I used to be a supervisor at a mortgage bank. During this time I had 2 relatively young children and my husband and I decided to have more children. At the time we did not realize anything was wrong with me. My oldest children are now 19 and 17. My younger ones are 11 and 7. I was able to keep my symptoms under control until four years ago. I have been on disability for a little over four years. The hardest part, mentally is the fact that I was the bread-winner in the family. My husband worked part time on an opposite shift so one of us would always be home with the kids. He is a fantastic father and was a great stay-at-home Dad. He is better at than me. I have very little patience and am a Type A personality who gets her fulfillment from work, doing a good job and moving on to the next project.

Getting diagnosed was a completely maddening process. I actually had one well respected neurologist tell me that I needed a psychiatrist, not a neurologist. I was so furious I wobbled out of his exam room with as much dignity as I could manage. After dealing with sever neurologists and ENTs I found a neurototologist. For the uninitiated that is an ENT who also have extensive neurology training.

First we tried that standard drugs, meclezine, compezine, and valium. None of them worked. We even tried steroids...no luck. And on top of everything else valium made me a nasty wench. I drove my family crazy for about 6 weeks until I went off it. I've had a tube in my ear and tried the meniette device. That only made me worse and the tube was constantly infected. After 18 months I had the tube taken out.

Ok, so that's the medical stuff. What I really want to share is the emotional, psychological and mental toll the disease takes not just on the patient, but also on the family. I have permission from my husband to share this. He is a very strong supportive man, but I think he is nearing his breaking point with the whole situation. He works 50 hour weeks, comes home, takes care of the kids, if I wasn't able to he makes, he does the laundry and he does all the driving for the kids' activities and the grocery shopping. He is asleep as soon as his head hits the pillow. He very rarely complains and is so patient. He deserves all the credit for keeping our family functioning.

I miss a lot of the kids' activities because I can't even get out of bed. My youngest is playing basketball for the first time this year and I have yet to make it to one of his games. I feel like I'm home, so i should be more involved. The guilt can be crushing. When they tell me that they understand why I can't do things with them they tell me that they understand. They shouldn't have to understand. I know Meniere's won't kill me, but sometimes it makes me wish I was dead to get away from the unrelenting symptoms and feelings of isolation, uselessness and guilt. Don't worry, I'm not suicidal. Just usually depressed and in a deep dark place. I have to remember to climb out of it once in a while and remember there is light at the end of the tunnel.

I am unable to spend quality time with my family, let alone my friends. I have surrounded myself with wonderful people who have not given up on me, even now that I am at my worst. A phone call, a text, an email or a Facebook post can make my day. I do my best to keep in touch even though I sleep a lot just to get away from the dizzies. My husband calls me his dizzy broad. Wednesdays are his days off and we always hope that I will be feeling well so we can actually do something together. It very seldom works out that way. As for sex, well, I have enough motion sickness going on.

A few weeks ago I decided to have an endolymphatic sac decompression. Here is a relevant site: http://www.earsurgery.org/site/pages/conditions/menieres-syndrome.php

I will be having the surgery on Friday 21 October. I have to admit I am a nervous wreck. I feel like I have to do this to try getting my life back. My entire 30's were stolen from me. Years of my childrens' lives have been stolen from me. I have felt isolated and alone for too many years. I am hoping this works. I am a pessimistic person by nature, so I am trying to be cautiously optimistic. I hope to be able to another guest blog in a few weeks to say that the surgery was a success and I am on the road to recovery.

Thank you for sharing your space with me. Anyone who is interested in following my blog can find it at http://menieresdiseaserunningincircles.blogspot.com/

I wish you all the very best!

Jennifer

Thank you Jennifer for sharing your story with us! I can relate to so much of what you said it's comforting yet sad to know that someone else goes through this pain that I know all to well. One line that stuck out to me was, "Of course if your Meniere's is severe enough, like mine, you are not able to drive and spend a lot of time in bed or on the couch...alone." There are many times I've felt this same way....ALONE and isolated. But we are not alone. Just remember every day is a new day.

We look forward to hearing from Jennifer again soon! Of course once she is feeling up to it, she will be back to let us know how the surgery went and let us know how she's doing. Stay tuned! Wishing you a speedy recovery and fewer dizzy days Jennifer!

If you would like to be a guest blogger please click here to see how to become involved!

Much Love,
Shanon

Heavy Head

Yesterday was awful. I had that "heavy head" feeling. Somewhere in between vertigo and being dizzy. Every time I moved my head it felt like I was going to fall over...my head was SO heavy, it felt like a bowling ball was attached to whatever side I tipped it. Kinda like a quicksand feeling. Needless to stay I had to lay around a lot yesterday. It sucked. But today, so far is better (knock on wood). On my to do list: paint, clean, and make dinner. Anything and everything I can in the vertical position. You never know how long it will last.

Much Love,
Shanon

Jeff's "My Life with Meniere's" story

I'm very excited to post my first guest blogger's "My Life with Meniere's" story today! Not only is it exciting because it's the very first one, but it's equally exciting because this story is from someone I love. I'm happy to share with you my husband's "My Life with Meniere's" story. No, Jeff does not have Meniere's Disease (thank god!) but let's face it, MD doesn't only effect the person with the condition, it effects everyone around them. Jeff is not only my husband, but he is also my caretaker, my counselor and my best friend. He is always rooting for me on my good days, and helping me through my bad days. It amazes me how supportive of me he is and understanding knowing how easily my condition can go from good to down-right nasty in no time. Many people would have given up a long time ago, but he never does. He was the first one to respond to my quest for guest bloggers, so his story is the first to be featured here.



I’ve been thinking about this for a while; I guess I was just waiting for an invitation.

My name is Jeff, and I am Shanon’s (insert flattering adjective here) husband. I’m incredibly proud of her for the strength she has shown while facing a disease/disorder we had never heard of before it barged into our lives; however, sometimes (and I’ve told her this) I feel like it might help others to know how bad it gets. I don’t have Meniere’s and I enjoy relatively good health, but it has been unimaginably beneficial to know what she suffers through so I can support her.

Now don’t get me wrong, in our seven- or eight-year battle with Meniere’s I’ve read enough to know that while her symptoms are awful, many people have it much worse than she has, but she’s the one in my life – she’s my point of reference.

It’s hard to watch her quality of life diminish at such a young age. She doesn’t drive anymore because of vertigo, she has to have conversations with friends via text because hearing aides didn’t work and her lip reading is limited. She’s lost her job, her independence and a significant chunk of her sense of self, and every doctor we’ve seen eventually throws his hands up in frustration. She’s cried herself to sleep so many nights and for so many years that my words of encouragement have changed to supportive hugs and silence; if all the doctors have reached the end, I can’t give her any hope about her circumstances that doesn’t feel false.

Her family is great, and she has amazing friends who are always there for her, but many of them still don’t fully understand that Meniere’s is more than just a hearing disorder – it is, in many ways, an isolation chamber. They often don’t realize that when their faces turn from her, she loses the conversation when she loses sight of their mouths, or that every time she responds with a smile to a roomful of belly laughs, part of her feels left behind. And although volume and patience are vital when communicating with someone with a hearing disorder, she finds that many well-meaning people aren’t willing or able to give enough of these.

It’s hard; it’s hard every day. And maybe the best we can hope for is that our friends and family continue to make her feel a part of that circle by being mindful of her disability and adjusting their communication over time; Shanon and I both sincerely wish you the strength to let your circle know when you need the same.



Short and sweet. Thanks dear! I love you! Oh, and for the "insert flattering adjective here" part I would add "amazingly wonderful, handsome, passionate, caring, lovingly sweet" husband. Thank you Jeff!

Now it's your turn! Please contact me at fookaDESIGNS(at)gmail(dot)com if you would like to share your story. Thank you to those of you who have already submitted. I plan to share one about every week or so, so keep 'em coming. Until then...

Much Love,
Shanon

Need Support?

I'm making this post short but sweet. After last weeks horrible couple of days of vertigo attacks I'm still feeling a bit wobbly, so I'm trying to take it easy today. But, I wanted to share something with you...


Here are some cards I created for my blog. I thought it would help to have these sitting in doctor's offices and at support group meetings for meniere's patients and caregivers. I created them awhile back but I'm just now getting a chance to share them with you. In fact, some of you may have already seen them up close and in person, since they are already sitting in my audiologist's office now. Dr. Gary McKnight has kindly agreed to give these to his patients who are suffering from Meniere's Disease and vertigo. I've already heard from a few of you who found the blog this way! Woo-hoo! Welcome to the blog! I hope you all are finding support here and know that you are not alone. Please take a look around. You might notice at the bottom of each post there are "labels" to categorize each post. For example, at the bottom of this post you will find the labels: "support", "welcome", and "meniere's" If you click on any of these labels you will be directed to a page that will bring up all of my posts that relate to that topic. So if you are looking for more information involving different topics associated with meniere's disease such as, vertigo, depression, diet, support, etc, you can find it easily with just one click. I hope this helps and I hope you will consider becoming a follower (to the right of this page) of the blog as well. Be sure to visit often and comment as well. I would also like to invite you to share "your meniere's story". The more support we have from each other the better. Thanks again for all YOUR support! I don't know how I could get through this dizzy life without YOU!

Much Love,
Shanon


PS. If you'd like any of these cards for yourself or to set in your doctor's office just let me know. I'd be happy to send you some!

Bad Attack

After yesterdays negative post (and today's not so positive one) I want to state that I really don't like being so negative on the blog. I wanted this blog to be a positive experience, a place for Meniere's sufferers to go and fell like they belong and aren't isolated because of their condition. But let's face it, Meniere's Disease is anything but positive. It can be hell at its very worst. And here's why...

A bad attack is always lurking around the corner. You never know when it's going to show its ugly face. And when its there, beating you down you never know when it will go away. It could take several minutes, hours, or even days.

As you know from yesterdays post, I started my day with a horrible 2AM wake up call. A vertigo attack woke me up from a deep sleep to let me know my world was spinning. Luckily, it didn't last long and I was able to go back to sleep...once I changed rooms away from the dogs and hubby. (Sharing a bed during a vertigo attack is not a good idea...any slight movement can set you off into a deeper attack.) So, once I was camped out on the sofa I was able to go back to sleep. Unfortunately, that wasn't the end of my Meniere's episodes for the day.

After my disturbing middle of the night wake up call, I woke up on my own at a reasonable time later that morning. I was actually feeling pretty good, especially considering I had just had a vertigo attack only a few hours earlier. So I went about my day with my morning yoga, breakfast, checking emails, etc. I was doing pretty good. I decided it would be a good day for me work in my art studio....it's the one place I can go that I feel happy and can forget about my Meniere's for a little bit. Except this time. I soon realized that I was having small dizzy episodes. While I was looking at the canvas, getting ready to paint my next stroke everything started to spin. It only lasted a couple minutes so I tried to ignore it and work through it (which is never a good idea). It wasn't long before I knew that I needed to go lie down and rest. So that's what I did. I ended up taking it easy the rest of the day, trying to prevent anymore attacks. For the most part it was a good afternoon as long as I stayed put. Later that evening I found myself having an extremely bad headache. It came up very quickly and felt horrible. The pressure and pain was so unbearable that I decided I needed to take something for it. I'm not one who usually takes medication for any reason if I can avoid it, but this was one of those times I felt it was necessary. So I got up to figure out what drug I was going to take when it hit me, a bad vertigo attack. All of the sudden the entire room was spinning. I immediately had to lie back down and curl up in the fetal position, closing my eyes and holding my head for dear life. It didn't take long for the nausea to begin and I knew I was going to be sick. I crawled to the nearest trashcan which felt like miles way but really was less than 10 feet. I made it there just in time to throw up several times. I eventually made it back to the sofa where I laid there, hugging the trashcan and praying for my world to stop spinning. Like I said before, I don't like to take meds unless I absolutely have to and at this point I knew I had to take something to get the vertigo under control. My rescue meds were already sitting out on the table next to the sofa but I was so dizzy that I couldn't tell for sure which one I needed to take. I kept looking at the different bottles and baggies of pills trying to read the labels. Not getting anywhere, I decided on one and swallowed it with a gulp of water as quickly as I could so that I could lie back down. It didn't take long before I was throwing it back up. I waited for my stomach to settle down a bit and took another one, only to throw it up as well. I began to panic. How was the spinning ever going to stop if I couldn't keep the meds down?! As I was vomiting I began to cry. I was scared and I was alone. All I wanted to do was call someone to help me but I couldn't see the phone long enough to dial the correct numbers and then of course how would I be able to hear the person I called? I desperately wanted to call 911 hoping they could rescue me, give me a shot or something to make it all go away. Even if they could do this I knew it wasn't a good idea considering I didn't have health insurance anymore since I lost my job. So there I was, a slobbery, tear-filled, pukey, dizzy mess. All I could do was wait. So I waited. And waited. And waited. After about 2 hours of this nightmare I finally fell asleep.

Eventually Jeff came home from work to find me in this mess. Luckily by then my dizziness had stopped but that was not the end of my nightmare. My head was still in massive amounts of pain. It was so bad I couldn't even hold my head up. Jeff, aka my hero, helped me get cleaned up, made me a bland dinner to appease my stomach and gave me a migraine pill. Eventually the pain deteriorated enough that I was able to go back to sleep and rest through the night.

This morning I woke up felling better, but feeling like I had been run over by a truck....a really big truck. I feel quite achy, probably from being tense during the vertigo attack, and I'm still very tired even though I slept almost 12 hours straight. But I'm not dizzy. Not right now at least. I don't know when my next attack will happen. It could be weeks, days or even just minutes away. All I can do is try to enjoy every minute I have that is dizzy free, and pray that today is better than yesterday.

Much Love,
Shanon

Losing it...

I'm not sure how much more of this I can take. I try to act like I can get through anything. I try to be tough and put on a brave face every day. But it's getting really difficult. Bi-lateral Meniere's Disease is taking over my life. I feel like I'm losing it, mentally and literally. Mentally I feel like I'm going crazy with the constant ringing and buzzing in my ears. Lately it's been so bad I can't hear anything. I'm feeling alone and isolated without my hearing. I'm running out of things I can do by myself, without the conversation of others. I try reading books, painting or crafting, but at times I'm too dizzy that I can't even do that. Lately, as soon as I get into a good book or start on a new painting everything starts to spin. Heck, I can't even sleep without getting dizzy. I woke up at 2 this morning with the room spinning and all I could do is pray that I would just go back to sleep so that it would all stop.

So that's what I've been doing the last couple of days....sleeping, resting and losing it. I'm literally losing everything around me. I've lost my independence because I can't drive. I can't work anymore. I can't really go anywhere alone for fear that I will have a vertigo attack or at the very least I won't be able to hear what someone is trying to say to me. I feel like I don't even know who I am anymore. I just want to be normal. I want to be able to go to work, run errands on my own, talk on the phone with family and friends. I want to be happy. But I can't. Because of Meniere's Disease I've lost my job, my independence, my ability to have a child. It's all gone. And now I'm losing my home. My young adult life is wasting away. I feel like an old lady, unable to hear or walk on my own sometimes. It's like I'm an 80 year old woman with the spirit of a young 30 year old. My spirit is still very much alive. I feel young, energetic and creative. I want to do more. But instead I'm stuck on the couch losing everything...watching everything I love around me disappear. Waiting for the room to stop spinning and the tinnitus to stop screaming in my ears.

Thanks for listening, or reading I guess. Thanks for being there for me. Hoping you're having a dizzy free day.

Much Love,
Shanon

Busy, Busy, Busy!

Wow! Things have been crazy busy lately. As you know, from recent posts due to my circumstances we are now trying to sell the house as we are unable to live off of Jeff's income alone. We need to down size, which is fine with us as we've been wanting to move for awhile, but we were just wanting to wait until the Spring when the chances of selling were better. Now we're facing Fall and Winter trying to sell a house in a down market...the odds aren't in our favor. But, it is what it is. Hopefully we'll find a buyer soon. It really is a beautiful home with a big fenced in backyard and large deck for entertaining. We've been working so hard to get it all fixed up and ready to go on the market. It's turned out very nice if I do say so myself....

After we were done landscaping, refinishing the deck, and cleaning and organizing the inside we were pretty impressed. It kinda made us want to stay. But of course we can't so now it's FINALLY on the market! Yay! If you, or someone you know are in the market for a great home in Topeka you can check it out here.

Oh, and don't forget...I'm still looking for YOUR Meniere's story. Thanks so much to those of you who have submitted your story all ready! I plan on getting a few more and then adding them to the blog either on a weekly or monthly basis, depending on how many submissions I receive. But don't worry, they will all be added to the blog soon! If you haven't turned yours in yet be sure to do so, or just let me know you would like to submit something soon!

Much Love,

Shanon

ATTENTION

Calling all Meniere's sufferers,
friends, loved ones and caregivers of
Meniere's patients.

I'm looking for guest writers for the blog. Ever since I started the blog it's always been my intention to have people be able to interact, and be able to tell your own story about "My Life with Meniere's". We want to know how it effects YOU. How long have you had it? What are your triggers? What helps you get through each day? Maybe you know someone with this disabling condition? How does it effect you to see a friend or loved one struggle? How do you cope?

If you are interested in telling your story please leave a comment below or send me a message (fookaDESIGNS at gmail dot com).

You can share whatever you like. As little or as much as you want. Share photos, stories, poems. Feel free to be anonymous if you prefer. It's up to you. All we want is to let others know they are not alone....and neither are you.

Much Love,
Shanon

Meniere's World has your back!

I recently came across a zazzle shop called Meniere's World created by Joe Young. The shop carries apparel and various other products that focus on Meniere's Disease and it's symptoms. They are quite humorous, even though they are unfortunate feelings that many meniere's sufferers go through. But somehow having a shirt that says, "I'm not drunk, I have Meniere's Disease!" makes it all a little better. Here are a few of my favorite items available:




Be sure to visit his shop and check out the rest! I'm sure you'll find a few of your own favorites!

In other news, today started out dizzy but it got a lot better as the day went on. I've started a new diet and supplements. We'll see how it goes...I'll keep you posted!

Much Love,
Shanon

Much Love

After my last post I received so many comments, messages and emails all from people showing their support and understanding. Thank you all SO much! I am truly grateful to have family and friends who support me through my battles with Meniere's.

Unfortunately, my latest battle is finding out that I have been dropped from my long term disability. Obviously, this was some disappointing news to take. I found out a couple of weeks ago and ever since I've been on an emotional roller coaster and going nonstop to figure out a plan. Things have just been crazy...which is why I've been away from blogging for a bit, sorry about that. But, there's been so much to think about. Can we afford to live on Jeff's income? Where would we go? When is the best time to sell the house? Can I work again? I'm still scared to even drive, how would I get to work? Where could I work? Who would hire someone who can't hear and has to go lie down whenever they get dizzy? Ugh! There's so many questions with so few answers. But we have decided that it's best that we try to sell the house and rent somewhere cheaper and closer to where Jeff works. Right now he has a 45 min. commute one way so we're hoping we'll get to be somewhere closer to save on gas. We've been working like crazy to get the house ready to put on the market. We're getting closer to being done but still have quite a bit to do. Hopefully we'll get it on the market within the next couple of weeks and it sells fast! If not, I'm not sure what our next move will be. But honestly, we can't think that far ahead right now. We're just going to take it one step at a time so we don't stress out too much. I've already got enough stress right not to worry about my future stress! lol!

Anyways, aside from a couple of dizzy days lately things have been going pretty well considering the circumstances. I think this blog and all of your support is really what helps me through it all. Thank you all SO much! I always end my posts with "Much Love", but today I mean it more than ever!

Much Love,
Shanon

I'm just trying to do the best that I can

I'm back from my trip to Indiana. I had a great time and really enjoyed my visit. Unfortunately, I couldn't hear much for most of the time so it was difficult to keep up in conversations but I did okay. Thankfully my family caught on pretty quick that they needed to speak up and look directly at me so I could read their lips. Luckily, no major vertigo attacks. Only felt a little dizzy the first night I was there and then a little the day after I got back, probably from all the driving. Anyways, here is a pic of me and the birthday boy!


Overall it was a nice trip, but it's good to be back home. EXCEPT for the fact that I came back to some unfortunate news...

I don't want to get into a lot of details right now, but basically some people seem to think that being on disability means that you can't have ANY enjoyment in your life. Painting, felting and other arts and crafts make me happy. I don't make a living off of what I do. In fact, I hardly ever sell any of my work. I just do it because I enjoy it. It's one of the few things I can do on the days that I'm completely deaf and not dizzy where I can actually feel somewhat at peace. I'm able to somehow tune out the constant tinnitus and forget about my hearing loss and just be free for a little bit. I can't do it every day. Sometimes I go weeks without stepping foot in my studio because the dizziness, headaches, and depression from isolation and hearing loss are just too much. But as soon as I'm able to get back to the studio to paint, draw or create something new I'm going to do it. It's my time to feel somewhat normal. I'm just trying to do the best that I can with what I'm given. I wish everyone could see it that way.

Sorry for the rant. I know most of you understand where I'm coming from. It's difficult to live with an invisible illness.

Much Love,
Shanon

Happy Labor Day

Hope everyone is having a great (dizzy free) Labor Day weekend! Too bad Meniere's Disease doesn't take a day off, right?! :)

Today I'm enjoying my day with hubby before I leave for the week. My mom and I will be traveling to Indiana to visit my sister and her family, and to celebrate my nephews 4th birthday! I'm really excited to see them, BUT as with any trip away from home, I'm very nervous. Afraid of a vertigo attack. Worried about traveling with my hearing loss. Jeff won't be going with me so I'm going to miss him terribly. Of course, because he's my best friend and we spend all our free time together, but also because he's my ears. He helps make sure that I'm always included in the conversation and translates for me when I can't hear. He's there for me when I'm having an attack or just a bad day. I'm going to miss him.

But, this is a great opportunity for me to see my sister and her husband, and my niece and nephews. I miss them SO much. I only get to see them once, maybe twice a year so I really am super excited.

So, while I'm away there may be little activity on the blog. I may stop in to say hi... we'll see.

Happy travels everyone!

Much Love,
Shanon

Symptom Chart

I've referenced in other posts before that I like to keep a daily chart of my symptoms. I think this is important for anyone with a chronic health condition, not just meniere's disease. I know some people like to keep journals or a diary, but that never really worked for me. I had trouble keeping up with it every day, and I think I felt like I had to write out everything and not just leave simple notes. Plus, it was a pain to go back and quickly reference how I was doing over several days or months. With my charting system, I'm able to just mark my symptoms every day and I can see how I'm doing over a month time frame all at once. Here is a sample of the chart I've developed specifically for meniere's symptoms. I've filled it out to give you an idea on how I like to keep my daily notes, but it's just a sample. Luckily this is NOT how my August went. :)



Everything in red is an example of how I like to fill out my chart. Of course, the "name" and "month" are self explanatory. The "cycle #" is a place for women to chart their cycle day to see if any of their symptoms seem to correlate. The "symptoms" list is a sampling of several common meniere's symptoms. It may not be complete and everyone is different with different symptoms so there is plenty of space below to add your own symptoms.

Next, you will notice several random red boxes. Here is how they work: Every morning while I'm eating my breakfast I fill out my chart for the day before. For each symptom that I experienced I would fill in the box. I like to take it a step further and fill in each box with how severe the symptom was. I fill out a 1/4 of the box if the symptom was mild, 1/2 the box if it was moderate, 3/4 of the box if it was severe and the whole box if it was debilitating. So let's say I had a bad vertigo attack the day before with some nausea but my hearing and tinnitus were okay. I would probably fill in a whole box for the vertigo attack, 1/2 a box for the nausea, and 1/4 of the box for the hearing loss and tinnitus. After several days and months it's easy for me to look back and see what days were bad and I can start to notice trends. For example, since I've started charting I've noticed that my neck aches are usually a sign that I will be having a dizzy episode soon and if I ignore them I will eventually have a full blown vertigo attack and maybe even drop attacks. Once I realized this I started paying special attention to how my neck feels, especially while I'm on the computer or painting or doing some other immobile activity. I started doing daily yoga and stretching exercises for my neck several times a day. I don't spend several hours on the computer like I used to and I try to take breaks while I'm painting. It's all helped and it's all because I started charting my symptoms.

Finally, at the bottom of the chart you'll notice a medications box column. Here is a place to note specific medications taken on certain days. So in the example scenario given above I probably would have taken Diazepam for the vertigo and possible something for the nausea. I would then note in the box that I took medication that day and then fill out the medication list below it with what I took. The same goes for the Vitamins and Supplements list.

It's really easy to do, and like I said it really helps to get an overall look at how your condition is effecting you every day, and if there is anything you can do to make it better. I recommend you give it a try. Here is a blank chart for you to download and print for yourself. I'd appreciate any feedback you have and feel free to let me know if you have any questions. I hope it helps!


Much Love,
Shanon

I can't escape!

People call them many things. Locust, cicada, harvest fly, tibicen pruinosa. Whatever you call them, most people agree, those obnoxiously loud bugs are annoying.

You know, those insects most commonly referred to as cicadas that start "singing" their extremely loud chorus in the summer evenings. Yeah, THAT's what my tinnitus sounds like in BOTH ears, usually accompanied with other various noises including humming, ringing and fax machine sounds. AHHHH! It can drive a person mad.

But, tonight I went outside and I actually felt some relief because those super loud cicadas were sort of drowning out my tinnitus. I sat outside and felt like for once, I wasn't the only one being tortured by the noise. EVERYONE could hear it. The only difference was, everyone else could escape the torture at any time by going indoors or waiting until morning for the cicadas to settle down. I on the other hand, can't escape it. It's constant. 24/7. ALL THE TIME. Luckily, it does fluctuate in intensity...but I'm not sure that's really any consolation. Sometimes it's not as loud. But when it's loud....it's SUPER loud. So loud that I have trouble sleeping, I can't think straight, or hear anything. That's how it is right now. That's how it is A LOT.

So, while it may FEEL like a bit of relief to go outside and listen to the cicadas do their thing, I'd much rather be able to go outside and JUST hear the birds sing, the thunder crash or the tree leaves blow.

Much Love,
Shanon

Well, that didn't last long

So, it was just a few days ago that I was so excited that the prednisone was working and my hearing was a lot better. Well, like the title of this post says, it didn't last long. I think I had 2-3 days of better hearing and then it went back to crappy hearing. Oh well, no big surprise. That's the way it usually goes whenever I do a round of prednisone. But the really crappy part about it is that I've been having more dizzy episodes now. So, not only am I back to being deaf I'm more wobbly. No major vertigo attacks (knock on wood) lately but the whole "feeling like I'm constantly walking on a tightrope" is no fun. I hope things get better soon.

Anyways, on my "to do" list today is to schedule a check up appointment with my ear doctor and to find out where we're at with the support group. I know I could use a little support from fellow Meniere's sufferer's right now, and I'm sure some of you could too. "Hang in there!" That's what I keep telling myself! :)

Much Love,
Shanon

Commenting

So this will be short and sweet as last night I went to bed dizzy and then this morning I woke up still a little wobbly and I'm still trying to recover.

But, I wanted to talk about the blog in general and the commenting feature at the end of each post. I've had several people lately let me know that they are having trouble leaving comments. I've been looking into it and I'm not able to figure out what the problem could be. I do know you have to have a registered account with google or one of the other various options but other than that there shouldn't be a problem. Can some of you who have had trouble contact me here (under email/contact) and let me know specifically why you can't comment? What error message is it giving you? Also, anyone who had trouble leaving comments but figured it out can you go ahead and leave a message below letting us know what the trick is? :)

Thanks everyone, I really appreciate it! I want this blog to be a helpful tool for everyone and the best way to make that happen is to be sure everyone is able to interact.

Much Love,
Shanon

Thank You Friend

Over the past several years as I've battled in and out of hearing loss I've started learning a bit of sign language here and there. I've taken a couple of classes, watched tutorials and even bought a book or two on how to sign. But I've never stuck with it because, well honestly I've never needed to. While my hearing has been bad in the past, usually within days it comes right back up to a functioning level again. But lately, over the past several months I go much longer without being able to hear and the hearing loss attacks happen much more often than they used to. Honestly, over the past 6 months to a year I'd say I could say that there is a decent chance that I've had more bad hearing days than good, making me wonder, "Do I need to learn sign language?".

I talked to my hubby about it and he agreed that it might be good for both of us to learn how to sign for my bad days. So we started searching for classes and books and tutorials online. We even asked around for help and my dear friend Bailey came to our rescue. She quickly set up a dinner meeting to get us in touch with a couple of gals who know sign language. We met last night and it was a great evening full of support and generosity from people I just met, willing to help me in any way that they could. We talked about different options including hearing aids (which I've tried twice without luck), cochlear implants (which aren't an option right now) and of course learning sign language. We decided that at this point in time that Jeff and I just need to learn the basics to get us through the bad days, or weeks of hearing loss. We don't need to worry about proper grammar and all the rules that go along with signing. We just need a way for us to communicate without me being totally lost in the conversation and Jeff having a massive headache from talking so loud. So the plan is to take a free local sign language class that was suggested to us last night, and to continue teaching ourselves through videos and books. At this point we don't need to know a lot but it will be helpful to know the basics for now. Eventually I would LOVE to learn more so I can teach art classes to kids who are hearing impaired. Who knows.... maybe it will happen some day.




A BIG thank you to my friend Bailey for setting up our meeting and for just taking such good care of me. She is such a great friend. And of course thank you so much to Nancy and Sarah for meeting with me and for all your suggestions and support. I'm truly grateful for their kindness.

Much Love,
Shanon

ANOTHER round of Prednisone

Here we go again. After several weeks of MAJOR hearing loss I decided to do another round of the Prednisone steroid in hopes to reduce the inflammation in my ears and bring my hearing back up to a "good level" (for me anyways). I've taken this drug several times for this reason but unfortunately it doesn't always work, and what's even more unfortunate is that there are several short and long term side effects that can go along with taking prednisone, so I don't always like to take it to say the least. This time is no different.

As I've mentioned before I keep a daily log of my bi-lateral Meniere's symptoms. Looking back through my records I'm showing that this round of major hearing loss has been at its worse levels since about July 11th. That's OVER 3 weeks of being nearly deaf. And when I say nearly deaf I mean NEARLY DEAF. That's not being able to hear in person conversations AT ALL. I've been relying on reading lips and having people YELL at me so I can piece conversations together. Even that doesn't always work when my hearing is this bad, so out of frustration I usually just smile and nod and hope that I'm not offending anyone with my reaction... or lack there of. When my hearing loss is as bad as it's been I can't talk on the phone or watch T.V. or listen to music. Basically, I have to do a lot of things by myself...which can obviously become very lonely. So out of loneliness and pure desperation I decided to do another round of prednisone.

I started on August 4th with 30 mg a day for 3 days. Now I'm on 20 mg a day for 3 days and I'll continue tapering down from there. When I started taking it I immediately noticed my hearing getting better within that day! But the problem is those dreaded side effects I mentioned. While my hearing was getting better I also started having more dizziness. Luckily it hasn't been too bad as far as vertigo goes and it's been happening right before bed so I can just fall asleep and usually wake up fine the next day. My other problem with taking prednisone is how it effects my digestion. Trying to not get to detailed here, but I get stomach aches and other long term digestive problems from this medication. Not to mention other risks involved, such as osteoporosis, glaucoma and diabetes just to name a few. What's a person with bi-lateral meniere's disease to do? All these complications sure makes it difficult to decide on a treatment. And what's worse is that after 4 days of taking the meds, and with 4 days of better hearing, I'm now on day 5 and my hearing has dropped again! :( Frustrating to say the least. While I feel so grateful to have 4 days of decent hearing with the ability to have a conversation with my husband, talk to my friends, watch a movie and go to church. I'm back to a bad hearing day. Again I ask, what's a person with bi-lateral Meniere's to do? I guess all I can hope for now is that the prednisone kicks in again. My spirits could really use a few more good hearing days.

Much Love,
Shanon

P.S. Have you taken prednisone for your hearing loss? What kind of results did you have?

Support

I've said it before (and I'm sure I'll say it again), one of the biggest challenges for someone with Meniere's is feeling isolated. That's why it's SO important to find support from family, friends and especially from others who know what you're going through. Having someone to talk to who is experiencing the same tinnitus, hearing loss and vertigo nightmare helps. Sharing stories, suggesting helpful treatments and being there when you need a shoulder to cry on. Just knowing you're not alone.

There are many support sites online that are very helpful.

If you're on facebook I recommend joining these groups:

Meniere's Disease
Marlys Soderberg Meniere's & Tinnitus Support Group


If you're on twitter I recommend you follow these tweets:

@MenieresandYou
@dizzylore62
And the famous Kristin Chenoweth @KChenoweth
And of course ME :) @fookaDESIGNS

I'm sure there are more great Meniere's support pages out there. If you know of any be sure to leave a comment and let us know!

Also, I'm still working on the "in person" support group in Topeka. I'll keep you posted as I find out more!

Welcome New Followers

Hello and welcome to the new followers of the My Life with Meniere's blog! I want to thank you all for joining us, and to remind you that this blog is for YOU, it's for everyone. Everyone who has Meniere's, everyone who knows someone with Menier's, everyone who just wants more information about Meniere's. I blog because it helps me through the tough times and it reminds me that I do have good days too. I blog to inform people about this condition and give support to people living with it. I want this to be a place you feel comfortable sharing your experiences and talking about how it makes you feel. Living with Meniere's is difficult for many reasons but one of the most challenging obstacles I've faced is feeling alone and isolated. This blog helps me overcome that obstacle. So thank you again for being here and following along. Feel free to leave your comments and invite your friends and loved ones to follow along. The more the merrier!

Much Love,
Shanon

MIA

I know, I know, I've been missing in action for a week now! Sorry, but I have a good excuse. Yup, you guessed it...I have Meniere's disease. To be more specific the tinnitus has been bringing me down. In my last post I explained what tinnitus is, so here I'm just going to complain about it. *disclaimer the next paragraph has words that may not be suitable for all audiences. Read at your own discretion*

WTH, go away! What did I ever do to you?! Grrrrrr! The constant ROARING in my ears is driving me crazy. I can't hear, or think straight, or even get a good night of sleep! Leave me the F* alone!

Whew! I feel better now. :) Honestly, I do. But not only because of my little rant above, but because I've had a few temper tantrums and sob fests the last couple of days. I just couldn't take it anymore. I cried my eyes out. And now I feel so much better. No, it didn't do anything for my ears, but it did make me feel relieved to just let it all out. I spent several days feeling like I was being tortured, and frustrated that I couldn't do the things I wanted to do, like watch TV, listen to music, go to a movie or have a decent conversation with my husband. I was definitely feeling sorry for myself. So I just let it all out...I cried and cried and cried. But after I spent some time in bed with a box of tissues I realized that there is plenty of things I could be doing even with the constant tinnitus. After all, I'm grateful that I'm not having any vertigo attacks (knock on wood) so I should make the most of my time, right?! So I picked myself up, discarded all the used tissues, made my bed and I went to work in my studio, the one place that I can just lose myself from all the noise and just create.

I've been having fun making felt pins, working on digital illustrations, promoting my bird paintings and photographing my work. Here are some of my felt pins.

Felt Pins available here

I guess my point is that it's okay to get down about your condition, just be sure that when your done to dust yourself off and get back up again. Don't let your Meniere's or any other chronic condition bring you down for too long. And if you need a place to go during your own temper tantrum you can always come here.

Much Love,
Shanon

Tinnitus!

Ugh! It can drive a person mad! Seriously, I feel like I'm going crazy.

For those of you who don't know, tinnitus is ringing or noise in the ears. Many Meniere's patients describe the noise as ringing, humming, buzzing, roaring, crickets, fax machines, etc. And sometimes it's a combination of the noises. Unfortunately, it's a constant 24/7 complaint.

For me, it's in both ears and it's there all the time but it fluctuates in it's intensity. Most days I can surprisingly forget about it or even "tune it out". But when it gets SUPER loud it's all I can hear and feels like a death sentence. Currently I'm on day 3 of the SUPER loud tinnitus. At this point I'm ready to dig my eardrums out with spoons! Of course I'm only joking...kinda! :)

Some people say that famous artist Vincent Van Gogh suffered from Meniere's disease and that it's the reason he cut off his ear.


Well, I don't think I will go to such extremes, but I'd really appreciate it if the tinnitus could just give it a rest for a bit. Or forever really! :)

Much Love,
Shanon

Google+

Well, I did it. I started a Google+ account. So far I'm really liking it, well except that there are only a small handful of people on it right now. But if it takes off I'm thinking it will be a really nice social networking platform. I'm really liking the "circles". I even created a "Meniere's Support" circle. I think it will be a great support tool for me and my Meniere's buddies. If you're on Google+ let me know and I'll add you to my circle! You can find me just by searching "Shanon Fouquet". My plan is to share tips, recipes, the ups and downs, and simply show support with others suffering from this condition. I'm really excited! Hope you'll join me!

In other news, my tinnitus is out of control today! Can't hear anything! Disappointing to say the least, but hopefully it goes down soon. And hopefully this week will turn around for me. Last week was really tough. I had only 2 "good" days out of 7. Three of them were dizzy days and the rest were recovery days. I've been getting pretty down about it but trying to stay positive. I hope you're having a dizzy free day!

Much Love,
Shanon

One Step Forward. Two Steps Back.

Living with a chronic illness can feel like climbing an uphill battle with no end in sight. Every day can be challenging. But it seems the most difficult for me is when things are going really well and then BAM you hit a brick wall. Everything comes to a screeching halt. I'll be having what seems like a good day, or several good days in a row, and then out of nowhere that all comes crashing down. I can't help but feel like that I am being punished for having a good day and enjoying life.

Monday, the Fourth of July was a great day for me. I enjoyed spending time with family and friends, eating amazing food and watching the fireworks. My hearing was the best that it had been in a long time so I didn't even have to concentrate on reading lips in conversations. I was able to relax and enjoy myself. I even rowed a boat a little that day, and found myself in a push-up competition. I felt amazing! ....well amazing for someone living with Meniere's disease. Unfortunately, I paid for that good day. For that ONE great day, I spent the next TWO days in bed too dizzy to move. I felt worthless and pathetic. After having a wonderful day I was now bed ridden, unable to even take care of myself. What did I do wrong?! Why was I being punished for enjoying life and being able to do what everyone else gets to do on a daily basis?

Unfortunately, I don't have the answers to these questions. All I know is that that's just the way it is. I have to learn that I can't over do one amazing day, otherwise I might regret it later. It's important to find balance and not take on too much all at once. But it is so difficult. For the past two days I've been lying in bed feeling sorry for myself, thinking about all the things I could be doing, but that I couldn't. And all I wanted to do when I was feeling better this morning was to play "catch up". I wanted to clean the house, do the laundry, work in my studio and prepare a healthy supper for me and my husband. But I had to slow down and think about the consequences to these choices. If I jump out of bed from being dizzy for two days straight I'll more than likely end up back in bed before the day is over. So I made a plan for the day and stuck it on the fridge:

1. Yoga
2. Clean house
3. Blog

That's it! Three things on my "to do" list for the entire day. I know it seems pathetic, but I know it's all I can handle right now. And trust me, I feel A LOT better about this list than I do about my wallowing around in bed for two days doing nothing list. I have to accomplish something and three things is something. With this list I'll feel like I have a purpose. It's not much of a purpose but hopefully if I keep my daily goals simple and attainable I will be able to add more to my list, and have more good days. Eventually, I could have two steps forward with only one step back. Or maybe event three or four steps forward, with only one step back. I realize that I can't beat Meniere's disease all together, but falling backwards doesn't have to happen every other day. And hopefully one day I will see the light at the end of the tunnel and so will you!

Much Love,
Shanon

Independence Day

As I think of the word "independence" I think about all that I've had to give up on because of my bi-lateral Meniere's disease, causing me to feel less and less independent. I don't go anywhere without my cell phone...not even within my own house. I don't drive anymore. So many times I've had to rely on my husband to talk on the phone for me, or help me through a face to face conversation because I can't hear.

It's easy to think about all that I've lost and the difficulties that go along with this condition. But I try to look at the positive. I try to focus on the good days. I'm still able to do my art and create because I have my vision. And I can still communicate with my family and friends with text messages, facebook, email and all the other wonderful forms of technology. And most important I have a wonderful husband who is happy to take care of me when I need help. If I can't have my personal independence I'm so grateful to have someone so willing to walk me through it.

Happy Fourth of July everyone! I hope you are having a wonderful and safe Independence Day! And if you're going to be watching the fireworks tonight, be sure to wear your earplugs if you are sensitive to loud sounds like many Menerie's sufferers!

Much Love,
Shanon

It's HOT!

It's REALLY, REALLY hot! Like over 100 degrees hot, with a 110 degree heat index. Yeah, I'd say that's hot! I'm not sure that the heat is a trigger for Meniere's sufferers, I've actually never heard of it being a problem with this condition. But for me it only becomes a problem because I start to spend less time outside. Going outdoors is crucial for me in so many ways. For one I need to go outside purely for my own sanity. I love the outdoors and nature and as soon as I'm cooped up inside for too long it starts to pay a toll on my mood and overall health. Not only is the outdoors calming and simply enjoyable for me but it's essential for my art inspiration. My paintings and digital illustrations are filled with birds, trees, flowers, bugs and other outdoor creatures. So if I can't get outside, I can't create. And if I can't create, I'm not happy. If I'm not happy, well I start to stress, and worry, and think about my condition which snowballs and makes everything worse. My point is that the outdoors is a good distraction for me. It's also important to me that I do yoga outdoors, and go for walks and even hikes when I'm feeling good. I have to move! If I stay stagnate for too long I start to get stiff and achy which for some reason triggers a dizzy episode for me. It doesn't make much sense, and I really haven't heard of this being a problem for others with Meniere's but I've noticed it. And one of the best things someone with Meniere's can do is be in tune with their own body and notice your own triggers. I know that if I start to feel a little stiff in the back or neck that I need to move around and stretch so that I can hopefully prevent an attack before it happens. And like I said, I prefer to do these things outside if I can but once the temperatures start to climb over 100 degrees I find that VERY difficult. So my plan is to continue to do my A.M. yoga on the back deck when the sun is just coming up, and I'm going to try to squeeze in a morning walk before it gets too hot. And if I don't get my walk in before the sun is beating down on me I hope to get out for a late night stroll when the sun is setting. Avoiding the summer heat is nearly impossible but hopefully this plan will keep me sane and with less dizzy episodes. I'll let you know how it goes!

And for those of you who haven't seen this cute cartoon clip you should check it out. It's Hot in "Toe-pe-ka"! :) Stay cool friends!

Much Love,
Shanon

Happy Anniversary!

Today my hubby and I are celebrating our 9th wedding anniversary! We've been together for 13 years and married for 9. He is the love of my life, my best friend, my prince charming. He is seriously my hero! I don't know how I would of made it without him throughout my time with this condition. He has comforted me through the spinning, held my hair back when I was vomiting, and wiped away my tears when I just couldn't take it anymore. He's had to carry me when I couldn't walk, and brought me my meals in bed. He has gone above and beyond what many husbands would do, taking the vow "...in sickness and in health" VERY seriously. I can't even begin to express my love for this man and how much he means to me. I love you honey, thank you for being so wonderful!

Much Love,
Shanon

A much needed vacation!

I can't remember the last time we went on a REAL vacation. For the last 2-3 years all my time off from work was spent in a doctor's office, or at home dizzy and in bed. So when my hubby had a business trip come up in Miami, Florida I jumped at the opportunity to get away. Actually, at first I was a little hesitant to go along with him, worried I would have an attack while I was so far from home and end up ruining both of our trips. But after we weighed our options and thought about the pros and cons of me staying home versus going with him, I soon realized that I wasn't ready to put my life on hold just because I have Meniere's disease. It just wouldn't have been fair for me to sit at home alone, waiting. Even though I was super excited to go I was still scared to death. In spite of my fears I decided to go for it, and let me tell you I'm so glad I did. It was great to get away and RELAX for once. I think I've been in such a routine of worry and fear that I forgot what it felt like to just relax. I got out and saw the sights, sunned by the pool, played on the beach and I ate yummy food without worrying about every ounce of sodium and sugar I consumed. Now don't get me wrong, I didn't go crazy eating whatever I wanted and I stayed cautious of my balance, but for the most part I let loose and tried to feel "normal" for once. I did have a couple "bad" episodes, but for the most part it went great! The second night we were there I stayed confined to the hotel room because of a dizzy episode. It wasn't a horrible attack but I definitely couldn't walk let alone leave my bed. I ended up passing on our dinner plans and stayed in bed to sleep. By the next morning I was feeling better. My second "bad" episode was when (silly me) tried snorkeling. We knew it might not be a good idea for me, but I just had to try. Like I said, I'm not willing to let my condition hold me back. Unfortunately, it didn't work out well. I don't recommend snorkeling for anyone with Meniere's disease, at least not in rough waters. The mask made me feel dizzy instantly and then getting in the water with waves crashing into me made my balance all disoriented. Luckily, I immediately noticed that this was a bad idea and I got out of the water ASAP! Spent the rest of my time on the boat while everyone else had a great time snorkeling. It ended up being kinda a waste of money but a lesson well learned. No more snorkeling for me! :)

Overall it was a great trip. We were there for four days and I had only one bad day. SO glad I decided to go! Don't ever let Meniere's disease hold you back. Do what you can and now your limits. Life is too short.

Much Love,
Shanon

Art Therapy

When I was going through some of my most challenging times with depression due to Meniere's Disease and the anxiety that comes along with it, I was finding it difficult to coupe as most people do. Unfortunately, the normal treatment for this is an anti-depressant, something that I didn't want any part of but was finding it difficult to avoid. The more severe my Meniere's got the more depressed I got and soon I found myself at rock bottom with no other answers. Everyone I turned to suggested drugs to get me through it. My family, friends and of course several doctor's gave me recommendations. But deep down I knew that this was not the answer for me. I'm more of a naturalist. I prefer to drink plenty of fluids and get lots of rest for a bad cold than to get hopped up on medications. So for me treating my sadness wasn't any different. But of course this was much more challenging than treating the common cold. Luckily, I found two things that helped me through it all, and still help me today.

One, was counseling. I think having someone to talk to and to teach me how to deal with my vertigo episodes was imperative. I received some great treatment through counseling and would recommend it to anyone who is battling with depression. The second thing that helped me though my darkest of days was art therapy. I found that painting took away my stress, anxiety and sadness. I even seemed to take away my tinnitus. Of course the ringing in my ears was still there but when I paint it's like it just disappears. It's amazing! Now I know what some of you are thinking, "I don't have a creative bone in my body, I can't do art therapy." PLEASE give it a try. You never know, you might surprise yourself! :)

Here are a few of my recent paintings. I created them on 6" x 6" wood blocks.

Bird Paintings - Acrylics on Wood Blocks

Start off with sketching, or doodling. Maybe try watercolor or pastels. Even paint by number can be therapeutic! I hope you'll give it a try and I hope you love it as much as I do. Of course, be sure to decide with your doctor if anti-depressants are right for you. I'm not a doctor and don't in any way recommend not treating your depression medically if it's what is best for you. What is most important is that you feel better!

Much Love,
Shanon

Being Prepared

It's always a good idea to be prepared. Especially if you have meniere's disease. Here are a few ways that I like to plan ahead. Feel free to add to the list in the comments section! :)

1. ALWAYS have your cell phone with you. - This can be tough at times but it's really important especially if you have a sudden drop attack and hurt yourself, or just need help getting to a more comfortable place to rest.

2. ALWAYS have your meds close by. - I don't leave the house without my medications in case of a dizzy episode. You never know when you might need them. AND be sure your meds are always filled and that you have enough on hand.

3. Prepare an emergency kit - If there is a place in your house or office that you spend a lot of time, I recommend you have an emergency kit close by. I'll have to post pictures of my soon, but basically it's a kit with meds, water, wash clothes, vomit bags, a pillow and blanket. Anything you might need in case you have an attack.

4. Prepare a food menu for the week. - It's a good idea to have meals planned out so that when you are having a bad day you don't have to think about "what's for dinner?" I also like to have meals prepared and ready to drop in the oven for the days that I don't feel well enough to make something.

5. Rest - Be sure to plan for enough sleep and rest when you need it. Not having enough sleep can really effect your condition. Usually I don't have to get up by a certain time in the mornings but when I know I will have to get up early I will go to bed early. And I ALWAYS lie down when I'm starting to feel sick. It's better to catch an attack early in its development than to let it go.

6. Allow plenty of time to get ready - One thing I've learned since my Meniere's has gotten worse in the last several months is to allow myself plenty of time to get ready to leave the house. I used to eat breakfast, shower, do my hair and makeup all in an hour or less. Now I give myself two hours. Sometimes I don't need the whole two hours and I'm ready early. But sometimes I have to rest several times while I'm getting ready which can take up the whole two hours or more.


I'm sure there is more, but that's everything I can think of right now. I hope this list will help you be prepared for your next attack and maybe lessen the anxiety and worry about when your next spell will occur. I once had a panic attack because I couldn't find my cell phone when I had to leave for work. I searched the house frantically, destroying everything in sight certain that I couldn't leave the house without my phone. It's better to be prepared for the worst and hope for the best.

Much Love,
Shanon

Saying "Good-Bye"

It's really difficult to say good-bye. That's no secret. But it's REALLY difficult when you REALLY don't want to.

Tonight my co-workers threw me a little farewell party. It was a wonderful gathering of people I've worked with and got to know as friends over the last 7 years. We enjoyed some yummy food, and had great conversations with lots of laughs. But in the end I had to say good-bye. Good-bye to friends. Good-bye to my job. Good-bye to being a graphic artist for a wonderful company who really cares about their employees. But, I never wanted to leave this way. Now don't get me wrong, I wasn't planning on retiring there or anything. But I wanted to leave on MY terms. I wanted to leave when I was ready. I wanted to leave because I got an exciting new job, or was going to be a stay at home mom, or for some other new chapter in my life. But instead it's because I have Meniere's Disease. It's because I can't always walk down the hallway from my office to the bathroom. Or I can't hear what's going on in an important meeting. Or I can't get out of bed and make it to work because of a dizzy episode.

But while saying good-bye may be difficult, it doesn't have to be the end. I can still visit my friends at work when I'm able. And on my good days I can still draw and paint and create art from home. I didn't want to say good-bye to my job, but I refuse to let Meniere's Disease take over. I refuse to say good-bye to my life.

Much Love,
Shanon

FEEL BETTER

Yesterday I received some good news. Actually great news. I should be ecstatic and relieved by this news but instead I'm feeling quite the opposite. Yesterday I found out that my application for long term disability was approved. Finally, after all those months of paperwork and calling doctors for medical information, and forms and emails and worrying over how we'll make it without me working. All of it is over, I was approved. Like I said I should be ecstatic, but instead after I heard this wonderful news I cried. I cried my eyes out. Not tears of happiness or of joy or relief, but tears of sadness. Sad because this is my reality. Sad because I can't work anymore. Sad because I don't want to be on disability, I JUST want to FEEL BETTER.


I got my first official job when I was in Junior High School. I worked in a daycare facility taking care of children. It was a good first job especially considering I had babysat for a few years before. It was a natural fit. It was also natural for me to be working at such a young age. While all the other 13 year-old kids were goofing off and playing video games, I was working. It was important for me to have my own money and to have responsibility. This is something that my parents instilled in me at a very young age. Working is a part of life and I happily accepted it.

I worked various jobs through high school and college. As a waitress, a cashier, even a telemarketer, which doesn't fit my introverted personality at all but I was good at it. I was good at every job I've ever had because I was a good employee. No matter how much the job sucked I gave it my all and never called in sick or was late. That is until I started having Meniere's symptoms. Eventually the vertigo episodes, the headaches, hearing loss and nausea got to be too much and as much as I hated it I called in sick to work. I missed work for numerous doctors appointments and came in late because I was too dizzy to get out of bed. It was painful. I don't mean physically, although the physical pain was there, but the pain in my heart hurt more. I hated not being able to make it into work. I hated asking other people to do MY job. I hated not following through on MY responsibilities. But now I have no other choice. Now my husband tells me that my only responsibility is to feel better. So that's what I'm working on. Trying to feel better. It actually may be my most difficult job yet. On my good days it's pretty easy, but the bad days are another story. Luckily my boss isn't too strict and understands when I'm having a bad day. Hopefully, one of these days I'll start having more good days than bad and I'll become a pro at this job. And eventually "quit" this job and go back to the working world. Until then, I'll just take it one day at a time.

By the way, the picture in this post is of a gift to me from one of Jeff's high school students. I've never even met her but she cared enough to make it for me when my health and spirits were really down. It sits on a shelf in my bathroom so I can see it every day and be reminded of the kindness of a complete stranger. If you know someone who is having a tough time with meniere's or any other condition be sure to send them a card or give them a call to say hello. You have the power to make their day a good day.

Much Love,
Shanon

Good Day

Well, yesterday wasn't a good day and the evening didn't get much better. I decided not to push myself and ended up not making it to my art opening. It's so disappointing how Meniere's gets the best of me.

But, that is in the past now and like with any chronic illness, it's best to take one day at a time, and to take full advantage of the good days. It's 6:00 A.M. on Saturday morning as I write this and so far it's a good day! I'm currently outside working on a new painting. I've watched the sun rise and listened to the birds sing their morning song. It's definitely a good day.

Off to enjoy it! Hope you're having a good day too!

Much Love,
Shanon

I think I over did it...

Well, we're not exactly sure what triggered it but I had a bed vertigo attack at 3:00 AM this morning. I have a feeling it was too much salt but hubby thinks it was too much sugar. At any rate I just plain over did it yesterday. After many meds and a couple sleepless hours last night I finally dozed off around 5:00 AM and slept in til 10:00.

Now, the recovery. The morning after one of these episodes I feel like I've been run over by a truck. A REALLY big truck. I ache everywhere. My tinnitus is bad and my balance is shot. Today, I will rest.

But tonight I have plans so hopefully I will feel better soon. Every first Friday of the month there is an Artwalk in town where all the galleries stay open late to invite the public in to enjoy music, food, poetry, food and of course art. My art will be on display at one of the new galleries here in town. I really want to be there so I hope things turn around for me soon. (fingers crossed)

Here is a sample of one of my pieces that will be on display tonight:

Four Seasons - Digital Illustration

I don't want to turn this blog into a "hey, look at my art" blog but it is a part of me. It is one of the challenges that make up "My Life with Meniere's". If you'd like to see more be sure to visit my fookaDESIGNS blog. :)

Off to recover. Have a great day!

Much Love, Shanon