Friday, September 30, 2011

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

Monday, September 26, 2011

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

Sunday, September 25, 2011

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

Tuesday, September 13, 2011

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

Monday, September 5, 2011

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

Thursday, September 1, 2011

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