It's been a year...

It's been a year since I had to quit my job and I'm still overwhelmed by the loss.  I still don't know what to do with myself.  I still wake up and wonder what my purpose is.  I still wander around the house trying to figure out what I will do next. 

Today I washed my hair.  I only wash it once or twice a week so it's kind of a big deal. It's sad that washing my hair is the big event of my day.

I'm back! ...sort of

First, my sincere apologies for taking a 6 month leave, especially without warning or giving a reason.  I know there are people who really enjoy reading this blog.  People with meniere's that need the support, the comfort of knowing they are not alone.  People that gave me their stories to share, but I never did.  I'm sorry.

Here's the reason... It became very apparent to me that working on the computer was a major trigger for me.  If I spend too much time staring at the screen I usually end up having a vertigo attack or at the very least I feel very off balance and just don't feel well...to the point that I have to rest a lot to get back to "normal".  I knew working on the computer was a problem for me but I didn't want to admit it.  Working on the computer was kind of my life... graphic design was my passion ...sort of my identity.  Letting that go was very difficult.  But I knew I had to.  So I did.  I avoided the computer as much as any human possibly can in today's world where technology is everywhere.  Obviously I don't avoid it completely (I am typing this right now), but I limit my time, I take breaks, and I pay attention to how I'm feeling when I'm on the computer.  It works.  While I still have vertigo and dizzy episodes but I know it's not because I'm straining myself on the computer.  So that's great.  I've figured out another trigger and I'm learning to deal with it.  The problem... I miss you guys.  I miss my blog.  I miss letting it all out.  So here I am.  I'm back.  But here are the "rules".  I don't worry about grammar or punctuation.  I don't have time to analyze every word, sentence and paragraph.  I just type.  I let it all out.  I'll post when I can and if I can't, I can't.  I still love hearing your comments, but it may take me some time to respond so please be patient with me.  Posts might be short and sweet.  They may even sometimes be dictated to my husband for him to transcribe here.  But I'm back.  ... sort of.  :)

I'm not even sure where to start to get you up to date so here's the gist of it...
we moved, (stress and meniere's, not a good combo) my hearing got worse...a lot worse, but no dizziness for over a month (yay!).  until....vertigo, spinning, headaches and just yuckiness (boo!).  still horrible hearing loss...it's stuck in the "off" position.  tinnitus, ringing, LOTS of LOUD ringing....I feel like I'm going crazy.  loneliness, isolation...even in a room full of my closest friends I feel alone.  these are my worst days.  i've had some good one's in there too.. they're just hard to remember sometimes.  but it's not about remembering the good days, it's about making today the best it can be.  so that's what i'm working on.... making today the best that I can.  I'll let you know when I figure out how to do that.

<sigh> It's good to talk it all out.  It's good to be back.

Much Love,
Shanon

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