My Kryptonite!

Living with my unwanted headguest, Meniere's, has been a lesson in patience and perserverance. Discovering what works and what doesn't work is helping me to have the best life possible with this chronic condition.

The following is a list that brings me to my knees:

1) Stress
2) Fatigue
3) Sodium
4) Flashing/Strobe lights
5) Cold/Flu
6) 3D Movies

The following is a list of what works for me:

1) Pacing myself
2) Finding joy
3) Family & Friends
4) Volunteering
5) Acupuncture, Massage & Chiropractics
6) Walking
7) Music
8) Being grateful
9) Faith

I take life one day at a time. Some days are good and some are bad. I choose to live in the light and take each day as it comes.

Wow! What Happened?

I'm dusting off the cobwebs and going to revive this old blog. Decided to not move over to Wordpress - no particular reason.

The last few years have been a period of tremendous growth spiritually, mentally and physically. I have come a long way from just a year ago. Meniere's does not control my life! I control it! 

My quality of life has increased one hundred fold. I am able to volunteer 12-15 hours a week and I have a part time job. Life is once again great! My bad days are fewer and I bounce back faster than ever. What's my secret? That's an easy one - I am putting myself first and taking care of me :-)

Still following a low sodium diet, taking a diuretic and managing my time so I get enough rest. Learning how to live with Meniere's has been a lot of trial and error. Cutting out stress and strife has been so beneficial. Most importantly - having a strong support system filled with faith, family and friends - priceless!

It feels good to be back! I have missed you all!

Transitions

I'm still in the process of moving my blog over to Wordpress - I hope to be back on track soon. Thank you for your patience.

UPDATE

Hi everyone,

I am in the process of moving my blog over to Wordpress. I hope to be up and running early November. Thanks you for all your support and kind words over the last couple of years. I look forward to getting back online and blogging about my life with Meniere's.

Will keep y'all posted :)

I Hate When They Say, "It's going to get worse before it gets better."

October has been a crazy ride! After weekly appointments of seeing a physical therapist, a chiropractor, an acupuncturist and a massage therapist, I can say without a doubt that my quality of life has taken a bit of a nosedive. The last couple of weeks have been a real challenge. My balance has been tested to it's limits and once again I am having to be ever aware of my surroundings so I don't knock things over. I have become more sensitive to light and certain noises so now I am back to desensitizing my brain to all this stimuli. I was able to do well on the standard 8 hours of sleep a night but now I am needing on average 10-12 hours (including naps). Yup things have gotten worse. Was it worth it? I will let you know the end of November. I am hoping that by shaking up my system I can reach a higher level of wellness than what I had the beginning of October. It's a long and arduous process that includes so much trial and error. So here I am - back to those baby steps!

The Learning Curve Continues

Two and a half weeks ago, after much coaxing, I decided to get some second opinions. I am now seeing a physical therapist, a chiropractor, an acupuncturist and a massage therapist. I have learned more about living with Meniere's from these four women in less than a month than I have from my doctors in the last couple of years.

At my last appointment, my physical therapist helped me put things in perspective with where I am in relation to living with Meniere's. She noted that from a clinical stand point I am doing excellent because I am not having vertigo, but as for my quality of life, I am no where near optimal. What I consider a good day isn't what she considers a good day.From her perspective I am basically just living at a minimally functional level. This means I can get through most days but if I don't pay attention to what my body is telling me I end up spending hours or days recovering from exhaustion.

Once again perspective is playing a huge part in managing this chronic condition. I figured that as long as I wasn't having vertigo and I could do my usual daily tasks, then all was good. I didn't take into account that on most days I still have to lay down a couple times a day for at least 1-2 hours to rest.  I think I have just set the bar low and maybe now is the time to re-evaluate and raise the bar a bit higher and so the journey continues.

Learning Curves

It has been one year today since I was diagnosed with Meniere's.So....what have I learned about living with a chronic dysfunctional vestibular system.

 1)  It is okay to ask for help.
 2)  Set clear boundaries with people.
 3)  Do not over schedule.
 4)  Do not invest time in toxic relationships.
 5)  Have low expectations of others.
 6)  Be realistic with expectations of myself.
 7)  Cherish the friends that enrich my life.
 8)  Don't take things personally.
 9)  Be honest with family and friends.
10) Live life.

The end result of all of these changes - a much happier me.

New Posts

I will be posting new blogs every other Saturday starting October 1. It's been a great summer! I have only had to deal with minor Meniere's symptoms for the most part. Making sure I eat well, exercise and get enough rest seems to be the biggest part of staying on track these days. I have developed a love/hate relationship with this chronic condition. On one hand I despise every bad day it has given me, while on the other hand I say thank you for making me wake up and live my life.

Enjoy the last few days of summer.

Gone for the summer - check back in September :-)

This summer is turning out to be busier than originally planned. So I have decided to take a break til September. I have been doing quite well for the most part experiencing only minor or short term symptoms. With that said, I want to take advantage of every minute I can while I am feeling well. Thank you everyone for your words of encouragement and for all the support you have given me on this journey.

Cheers!

The Value of Solitude

“The whole value of solitude depends upon one's self; it may be a sanctuary or a prison, a haven of repose or a place of punishment, a heaven or a hell, as we ourselves make it”

John Lubbock quotes (English Biologist and Politician, 1834-1913) A couple of months ago, I started to look at what I could do to improve upon in my environment, to help make me feel better. Immediately I realized that I am a chronic clutter bug. Why was I keeping all this stuff called "so called memories"  around. I was to the point where I no longer owned my stuff, it owned me. As I slowly started to purge my environment of unneeded and unwanted memorabilia,  I started to feel a weight being lifted off my shoulders. The more I got rid of, the easier it became to part with even more. My need to create a space where I felt at peace was getting stronger. Creating a space where I could have some order in my life was slowly starting to take shape. What a difference it has made for me. Having just one room that I can go to in my home has given me such a sense of calmness. It has been the best medicine. It has also inspired me to start working on the rest of the house.

Summer Postings

Will be taking a break from my blog for the time being.

Hope you all have a great summer.....and for all the dizzy readers....hope you have a spin free couple of months to enjoy the warmer weather!

Let Me Off This Rollercoaster!

I'm not sure what was going on week before last.  I had been feeling pretty good for the most part. Then for five days I had one of my worst experiences with tinnitus. It knocked me off my feet. I found myself on such an emotional roller-coaster. I started falling into a deep hole and the more I tried to climb out the deeper I fell. I haven't had such a feeling of despair for a long time. I was enjoying getting my life back on track and loved the feeling of being able to come and go as I pleased once again. As the stretch of tinnitus went into day three and four I found my freedom starting to fade. All I could do was cry, it was as if I was mourning the loss of a good friend. That friend being my freedom. It was a reminder to me that this f**ked up inner ear experience still runs the show. As much as I try to keep it under control it still has the power to take over and cause me much unwanted chaos.

As of today I am feeling better and with each passing day I am getting stronger and getting back on track. I am happy to report that  I am regaining my freedom once again. With the help of my husband and my dizzy friends my attitude has shifted back to a more positive mode. I'm out of the funk that consumed my life during those five days. I can honestly say that I was terrified that I was starting to slide backwards. I am so relieved that this was not the case.

Life goes on and so do I.

Hope you all have a dizzy free weekend.

Holding My Breath

For the last eight weeks I have been feeling pretty good. Most days my Meniere's symptoms are minimal and manageable. In the past, when I would have a week long stretch of feeling this good, I always felt like cousin Oliver (my code name for the onset of vertigo symtoms) was hiding around the corner just waiting to catch me off guard. This time it is different for some reason. I have not had any dizziness or vertigo for the last two months. I still experience tinnitus, brain fog, some ear pressure and the occasional headache but nothing like a couple of months ago. Maybe my holistic approach to living with Meniere's is starting to pay off.

A few months ago I purchased a book called "Let's Get Better" by Meniere Man on Amazon.com. Not sure exactly who this Meniere Man is - but the book is a good read. He talks about his experience of being diagnosed with Meniere's in his mid forties. He focuses on diet, exercise and alternative treatments in managing his Meniere's. Of all the books I have read, this one has been the most down to earth and helpful.

His approach to living with a chronic condition like Meniere's makes the most sense to me. By making my body as healthy and as strong as possible I have more of a fighting chance to find a place where I can live with this chronic condition with the least amount of restrictions.. I am not big on taking meds to manage the Meniere's unless my doctor can give me a logical reason why I should take them. I am also not ready to have any invasive procedures done at this point either ~ the success rates are not high enough for me to risk a poor outcome.. Fortunately, the ENT I have now takes a conservative approach to helping me manage my Meniere's symptoms.

I am now focused more on stabilizing my symptoms rather than stressing about how to make them go away. Which I don't think will ever happen anyway. I have better days and worse days. Fortunately for now,  I have reached a point where I am able to coexist with my symptoms and lead a fairly functional life.

The Power of Friendship

I can't even begin to imagine this journey without my dizzy friends. Yes, I have my husband and yes, he has been my rock and has stuck by me through thick and thin. However, having dizzy friends that are also living with an inner ear disorder too, are an integral part of being able to lead a productive and meaningful life. Just being able to share my feelings with friends who totally get my experience is worth more than all the money in the world. Having friends I can call anytime of the day to help me get through a rough patch is invaluable. Being able to just laugh about the absurdity of living with a dysfunctional vestibular system makes life more bearable. Having an actual authentic connection to another human being that shares my perspective with all of this chaos seems to help it all make sense. There is no way I could ever attach a price tag to friendships like these ~ they are priceless!

The support of my family and friends is important, but being able to have dizzy friends walking beside me on this journey makes the road a lot less lonely.

Here are two of my favorite business sites that are owned by a couple of my dizzy friends.Support works both ways. They are here for me and I am there for them.

Check them out :-)

http://www.etsy.com/shop/StellarDesignz

Browse the shop for simply elegant, contemporary designs for all occasions. Enjoy boutique-quality, signature pieces at affordable prices. Each jewelry creation is beautifully and personally crafted by hand using high quality materials. Pieces are uniquely one-of-a-kind or limited edition. Each order comes in a small box perfect for gift-giving. 



 http://www.barfboutique.com/

Our tin tie barf bags are waterproof, reusable, and sealable just like the ones found in airplanes but much, much prettier. We offer 115 original & iconic designs with a dash of humor and panache. These nifty, multipurpose bags make great gag gifts, party bags, goody bags, doggy bags, mini diaper bags, overnight toiletry bags, mini trash bags, and anything else you can dream up. The possibilities are endless!


Hope you all have a great dizzy-free weekend! 

For Better Or For Worse, In Sickness And In Health

My first couple of months living with Meniere's were seriously a living hell. I had days where I could see nothing but darkness. I thought I was doomed to a life of constant misery. It was during those dark days that I started to realize just how fortunate I was to be blessed with a caring and compassionate husband.

My husband has been my rock throughout this journey. I never realized one could love another human being so deeply. He has stepped up to the plate so many times to help me through each vertigo attack. Doing all those unpleasant tasks that go along with an episode of vertigo (which I know I need not explain in detail). He has held me to comfort me when the room was spinning so fast that I felt like I was losing control. His words of encouragement to help me get back on my feet and start living my life again are to this day never-ending..What did I do to deserve this human being? Where would I be without him? When he said to me, "For better or for worse, in sickness and in health." he truly meant it. I never realized at the time just how much those words would mean to me now. I have fallen in love with my husband all over again and can't imagine sharing my life with anyone else.

I have much to be grateful for and this I now know to be true.

I'll Take "Baby Steps" For Five Hundred Dollars Alex

A willingness to show  perseverance and diligence in order to accomplish a task. "What is patience? Alex".

Yes the biggest lesson I have learned from having an inner ear disorder is to be patient. A word that was never been a welcome part of my vocabulary. I have always been the type of person who likes a world filled with instant gratification. After seven months of living with this disorder I can honestly say that instant gratification is no longer a part of my life. Meniere's has been like an annoying little brother constantly making me slow down and be patient. I used to get frustrated when I could not master something after a couple of tries but now I am quite content with taking baby steps to reach my goals.

A few months ago my goal was to be more active. My ability to stay upright without being dizzy was not good. Initially I started off with a twenty minute a day walk with my dog. Some days were easier than others and a few days I could not go at all because my balance was so unsteady. I persevered though and after a couple of weeks I was able to add a few trips to the gym for a cardio workout. Gradually every couple of weeks I increased the intensity of each workout and added in a couple of Zumba classes. Throw in a three mile walk every couple of weeks with my husband and that's where I am today. I still have to make sure I rest for a couple of hours after doing any kind of strenuous physical activity. With that said I am feeling much stronger these days. As an added bonus my symptoms have become more manageable.  They are never gone but they have reached the point where I have stretches when I don't even notice them.

Seven months ago this amount of physical activity would have been out of the question for me. I wasn't able to walk from the  living-room to the kitchen without the aide of walls and door jams. Had I not developed some patience during this time I  know I would not be where I am now. Learning to be patient and to take baby steps has been a valuable lesson. One that will serve me well on this journey to wellness.


Movement is a medicine for creating change in a person's physical, emotional, and mental states.  ~Carol Welch

My Ah-ha Moment

The diagnosis of Meniere's has been a mixed blessing. There have been both good and bad changes in my life. The bad is pretty obvious for anyone dealing with an inner ear disorder.. The constant fluctuations in my symptoms make it difficult to make any short or long term plans. Fortunately for me my friends are very accommodating and will go out of their way to always make me feel welcome. As for the good side, having Meniere's has been the catalyst that has forced me into creating healthy boundaries. Which is something I have always had difficulties doing.

 I have always put everyone else's needs before my own. I was brought up in a family that did not tolerate selfishness. Living with Meniere's has made me realize that not only do I need to be a little selfish about my needs, it is critical that I put my well being at the top of my "to do" list if I am to be of any service to others.
By setting boundaries I have discovered a new sort of freedom that I have never before experienced. I am more honest about my intentions. I focus my energy on the people that enrich my life and take a step back from those who drain it. Wish I would have learned this lesson much sooner in my life.

When we know better, we do better ~ Maya Angelou

Mahalo :-)

Last summer my husband and I spent a week on the Big Island. It was 3 months after my first and only ambulance trip to the ER for my first public vertigo attack. Needless to say I was mortified to have so many people witness this not so lovely event. However, the attending paramedic was mighty good looking and that made the experience a little more palatable. Anyway back to the Hawaii story.

The main reason I want to share this story is to express my initial fear about going to Hawaii. I knew that the mixture of heat and humidity would not be a good environment for me and that I was taking a big risk. Our first three days in  Hawaii were filled with sightseeing and meeting the locals. Any concerns I had about the climate quickly faded. I was feeling great! Then on day four we decided to drive around the whole island, starting from our hotel in Hilo. All was going well....we went to Volcano National Park.....drove down to the southernmost  tip of the island......made it to Kona where we stopped for dinner.....then we headed  back to Hilo......by then it was getting dark. My husband and I were both exhausted , we were pretty much ready to strangle each other and we finally ended up not talking to each other. So as we are heading east on the north end of the island heading back to our hotel  it starts! Yup BAM! The vertigo monster found me.  The minute I said, "Oh no" my husband knew what was going on. He pulled the car into a parking lot and helped me to the backseat where I could lay down. He drove the remaining hour and a half back to Hilo with me spinning in the backseat and moaning " How much longer?". Once we got back to the hotel he helped me back to our room where I was able to sleep the worst of it off. The next day was a little rough but I was still able to get out to do more sightseeing. As the day progressed I quickly forgot about the vertigo attack and was back on track and enjoying the last few days we had left.

Our last night in Hilo we decided not to turn on the air conditioner because there was a lovely tropical breeze coming through the window. Big mistake! The morning of our departure arrives and we have to leave for the airport by 9am. I get up at 6:45am to get ready and just as I sit down for breakfast the room starts spinning BIG TIME! I crawl back into bed and shake my husband to wake him and let him know the vertigo is back. It is 7:30am. The clock is ticking, we have 90 minutes before we have to leave for the airport. Hoping this is just a minor setback I just lay still and hope the vertigo will pass.One hour later I am getting worse. The room is spinning out of control. We contemplated calling the airline to see if they could get us out on a later flight. It was at that point that I just decided I wanted to go home. Even if it meant having to use a wheelchair. Which is exactly what happened. I could now experience a vertigo attack in public for the second time. I will never forget the friendly and helpful porter at the Hilo airport that helped me and my husband. After we were all checked in and ready to go through security the porter says "Goodbye and good luck", then he knelt down beside the wheelchair and says to me, "Don't worry ma'am, plenty of people have left Hilo sick and in a wheelchair." Hmmmm not sure if he knew how that sounded or not. Anyway I had to use a wheelchair and airport assistance to go from Hilo to Honolulu and then on to Seattle. Now the good news is that by the time we got back to Seattle I was able to walk off the plane and felt like a million bucks! Go figure.

What I am trying to say is that even after experiencing some of the worst vertigo ever, I can honestly say I still have no regrets.For if I had not tried, I would have missed out on some amazing experiences.  My fondest memory will always be our journey to the top of Mauna Kea to see the sunset and to do some serious stargazing. I have never seen so many stars in the sky. Just thinking of that night still leaves me breathless.We had other adventures but this one will always be at the top of  my "favorites list" for Hawaii.. Looking back I now realize that if I had let my fears hold me back from going I would missed out on so much!

My advice to you all is that even if you are fearful, take that step. At least you tried! Mahalo :-)

Next Stop - Stupidsville

As time goes by I find myself enjoying longer stretches of feeling pretty good. The longer I feel pretty good the more confident I become. The more confident I become the more likely I am to jump on the train to Stupidsville! This usually happens when I start to convince myself that maybe, just maybe the doctor misdiagnosed me and I really don't have Meniere's. Maybe it was just a lengthy virus and now it has disappeared. Yes that's what it was - a misdiagnoses and a virus  - and now I am cured! Hallelujah!    


So forget about the low sodium diet, screw the routine, so what if I miss the odd dose of that diuretic, sure I can do 60 minutes on the treadmill (half of that jogging), so what if I let myself get exhausted, who cares if I stay up til 2am. I'm back to normal and I can do whatever I want,  whenever I want and however I want, because I am cured! 


Within 48 hours of this reckless behavior I am well on my way to Stupidsville. The five pound lead ball is now rolling around in my head, my body has a magnetic pull to the right, all sounds are amplified 100x, the tinnitus is louder than a heavy metal rock band and the brain fog is so thick that no thought can land safely. Then I start making my deals with God. Yes it is amazing how religious one can become when you feel like  you are being continually hit over the head with a 2x4. Well in the end the only thing that helps is a good sleep and a return to my Meniere lifestyle. It can take up to a week for me to get back on track at which time I make a vow to myself to never stray from the path of wellness again. Even with that said, I still get the urge to buy that train ticket for one more trip to Stupidsville. 

A Beautiful Distraction

A royal wedding was just what the doctor ordered! Sometimes I need a day away from reality and today fit the bill. Being able to focus my attention on a fairytale wedding vs my Meniere symptoms is truly a blessing. Not having to think about all the challenges that go along with living day to day with a chronic condition is a gift. Tomorrow life goes on and I will continue to strive to make my body strong and healthy. I will be forever grateful to my family and friends that continue to support me and love me. Life is good.