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