Wednesday, January 30, 2019

How to have a social life with a vestibular illness


Social life? I used to consider myself the life of the party...Whether it was a party, concert, bar outing, bbq etc!! I never had to stop and think about if I attended  a social event, was it going to be crowded? Was it going to be loud? Were the lights going to be bright? How long would the event be? What type of food would I be eating? Holy moly, are you kidding? The past, I would get ready and jump in the car and go. None of these questions would ever enter my mind.
Unfortunately, people with vestibular illness's have to think about all of these things in order to get prepared for an event. It sounds stressful, but it helps to think ahead just in case. Many of us become a lot more symptomatic if there are a lot of people, or the lights are too bright. And if the food has a lot of sodium it can cause symptoms to begin. If  you stay out too late, it can wreak havoc the following day. There are days that I miss just being spontaneous, but being prepared really helps.

Thursday, January 24, 2019

To be young again

 Gosh, remember the days of not having a care in the world? Actually, I take that back..I cared about my my cabbage patch doll, my big wheel, my florescent light up hot pink phone. Wow, those were such simpler times. Ever since this illness began I often find myself daydreaming about my childhood. I was extremely blessed to be given the best parents in the world and a fun, caring brother ( I didn't think this of my brother when I was real young) but today we are best friends. I sometimes long for those days when my biggest worry was, I wanted to make sure I got home in time from school to play outside. And it was always warm and sunny in my early memories.  It kind of made me sad...Why am I sick now? Why can't I let these worries go? How long is this illness going to be with me? But then, I look into my sons eyes and I realize this is his innocent time..These right now are his early memories that he will always look back on. Yes, there are days I can't get out of bed, or days I can't make dinner, but I will tell you, this damn disease will never keep me from making wonderful memories for my son. I have learned to be honest with him throughout this journey, and I think it has helped him not worry about his Mom so much. We laugh each day together, we dance each day together and each day I tell him how much I love him. And for that, it makes my today pretty darn special. I am blessed to have this kiddo and this disease will never change that.

Beginning symptoms of a Vestibular illness

The vestibular system includes the parts of the inner ear and the brain that control balance and eye movements. If the system is damaged by a disease, aging, or injury, vestibular disorder can result, and are often associated with one or more of these symptoms :

vertigo/dizziness
imbalance
vision disturbance
hearing change
cognitive or psychological change

by, VEDA

Monday, January 21, 2019



"Don't be ashamed of your story, it will inspire others"  

                                                                                                               Unknown

Sunday, January 20, 2019

Dizzy Monster


It’s 6:00 pm on Sunday evening. I am supposed to be downstairs with my family watching the Chiefs vs  Patriots football game…. But no, I am upstairs laying in bed. I can hear the roar of the game echoing through the house., this sucks!! This illness had other plans for me this evening. You never, ever know when this illness is going to pop up and say hello. Such a rude way to say hello.
I was trying to get dinner prepared when out of the blue, the items in the fridge started to sway and floor beneath me felt it was moving . My legs instantly became weak, my heart began to pound and I fell into a cold sweat. What the heck was this?? I don’t have time for this right now!! This is something I say a lot.  I told myself to try and not panic, think about what I have learned the past few years. As I was thinking this, I told my boys I am going to head to bed. This is where I had a decision to make, I could go freak out in my bed by myself or I could take all the lessons I have learned in my weekly therapy appointments and put them to work. This is exactly what I did.
I decided to get into my comfy bed and begin to write. If this had happened last year, I would have been in a dizzy panic for days. Instead I told myself lets go relax and write this all out. This unpredictable illness is not going to win, we are going to win together!!!! What do I mean?!?!  My therapist advised me to look at my illness as a type of cartoon monster. Sounds kind of strange, right? That’s what I originally thought too. But, If you can put a cute face to it, rather than some horrible scary, unknown illness it really helps. And when the dizzy monster knocks on my door I let it in, rather than slam the door shut. Accepting the cute monster makes it easier to accept. I ask myself, what is the monster here to tell me? Am I tired? Am I stressed? Have I eaten the wrong foods today etc? This is what I have learned in time. And believe me, accepting this has taken many years  but it has been the best advise thus far. YOU NEVER KNOW WHEN THE MONSTER MAY SHOW UP, BUT THE WAY YOU WELCOME IT COULD MAKE ALL THE DIFFERENCE.
My DIZZY MONSTER

Tuesday, January 15, 2019

Take advantage now not later

I have to say one of the best times of my life was when I rowed Crew for Seattle University. It taught self discipline and built enormous strength. It laid the foundation for what was to come in my future. I would have never thought that an illness would take away the ability to ever be on the water again. I live in the Pacific Northwest, which is entirely surrounded by the beautiful Puget Sound. Many people like myself that have a vestibular condition can't enjoy the water. It completely overwhelms the eyes/ears and brain. I am so truly blessed that I had those years in my past to experience what crew was and all the lessons it taught me. ALWAYS DO WHAT YOU WANT TODAY, CAUSE TOMORROW IT COULD BE GONE!!

Sunday, January 13, 2019

"Body Love" by Kelly leveque

It's 2019!!! I can't believe it. I have tried ever single darn diet on this planet. seriously I have!!! I pride myself on being healthy and since this disease appeared it has taken a toll on my body. A very close family friend recommended the book "Body Love" by Kelly Leveque. Kelly is a health consultant that believes every meal/smoothie should consist of a mix of protein, fat, fiber and greens. This helps your blood sugar, which will curve the unwanted snacking and provide endless energy.
I am obsessed...I am back on her plan and it is truly amazing how incorporating the 4 main ingredients in each meal keeps me going all day. This is very clean eating, which is the best way to eat for anyone with a vestibular illness. GIVE IT A TRY!!!  Check out bewellbykelly.com

Wednesday, January 9, 2019

 “Live to inspire, and one day people will say, because of you, I didn’t give up” – unknown

Tuesday, January 8, 2019

Vestibular Disorders and anxiety/panic

.

Anxiety: Intense worry and fear about everyday situations.
Panic: Sudden episode of intense fear that triggers severe reactions when there is no real danger or apparent cause.

Symptoms of Vestibular Disorder's: 
  1. Vertigo/dizziness/nausea
  2. floating/rocking sensation
  3. Feeling heavy body
  4. Off balance
  5. Blurred vision
  6. Sensitivity to light
  7. Discomfort from busy visual environments such as traffic,crowds,stores.
  8. Poor depth perception
  9. Loss of hearing
  10. confusion/disorientation
  11. Memory loss
  12. Extreme mental and physical fatigue
  13. Panic/Anxiety!!!
 I have experienced each and every one of these symptoms, but number 13 recently reared it's ugly head. I have always heard, especially in the last 10 years about anxiety and panic, but always thought it meant just stress... NO, NOT EVEN CLOSE!!!

Growing up in the mountains above Santa Cruz, Ca I have driven all kinds of vehicles, from VW bugs to huge 4x4 trucks ( I have always had a bit of hillbilly in me) And all types of terrain, from crazy mountain roads to the many Bay Area highways.  I drove with a ton of confidence. Driving has always been a time to reflect and relax for me. I would love to drive from Seattle down to Santa Cruz on  solo missions to visit my folks. 

Well, this all changed a couple months ago on a typical rainy day in Seattle. I was following my husband in the left lane on Highway 5 and out of the blue, I felt as if I was gliding into the right lane. My eyes instantly went blurry and I felt as if I was going to get into a horrific accident, right there behind my husband. I was directly on the left side on a huge semi..a feeling came over me that I had never ever experienced. Chills going through my spine, heart racing and shear panic that I was going into a mental state that I would never come back from. WHAT WAS THIS??

I slowly got into the far right lane and took the first exit. Hands white from gripping the steering wheel so tight, I pulled into a gas station didn't know what was happening or how I was going to continue home. I tried to tell myself I was okay and tried to take deep breaths, like I have heard to do if you ever panic. I will tell you, it took a ton of guts to get back on that freeway..but I did and made it home safe. By the time I got home I felt as if I was involved in a physical fight. My eyes looked like I had been awake for days and I was so darn tired. My husband gave me a huge hug and I headed to bed for a long nap.

After talking with my therapist and doing more research, I realized I definitely had a panic attack. With all my other symptoms, lets just add this to my long list. DAMN!!
Come to find out, panic/anxiety is quite common with vestibular disorders. I think because we are already on high alert and when in a situation our brain turns on the "fight or flight" response. Our brain, eyes and ears tend to become overwhelmed and the wires become crossed. This is when shear panic kicks in. I have been working on techniques that the vesibular.org recommends as well as breathing, relaxing and mind techniques. Check out vestibular.org.



Sunday, January 6, 2019

NEW NORMAL

New normal!! I didn't want a new normal. I think the most difficult part of this disease was wanting the "old me" back. Wanting to wake up happy, not worried about what this long dreaded day had in store.  Wanting to look forward to going to sleep at night in my cuddly bed, rather than dreading bed time because I knew the next morning was going to be a repeat of today.Wanting my son to see me as the happy Mom dancing in the living room, rather than laying in bed. Wanting my husband not to worry if his wife was ever going to be the same again, rather than being completely spontaneous and happy together. NOOOO, I did not want this. How was I ever going to laugh again or look forward to the days to come...???
I am here to tell you that the new you can be just as happy as the old you. It definitely takes some inner strength and a tad bit of courage, but if I can do it, so can you.
I think the day I finally accepted the new me, life began to become a little more bright.
I also had to take solace in the fact that I am not alone, difficult experiences and illnesses are present in the lives of all humans. I was not alone!!
Instead of reacting to unpleasant physical ailments and sensations, I moved my mind toward a state of acceptance and kindness towards this disease. It was a new part of me and if it was going to be my new roommate, we needed to get along and work together.
Also knowing that this disease is as unpredictable as the weather and can change at any time. "the wind blew this discomfort in and it may blow it out at any moment" {How to be sick by Toni Bernhard}


Saturday, January 5, 2019

So proud to be working with this organization as an Ambassador. This Vestibular Disorder Organization helps people with all types of vestibular ailments. Diagnosis is very difficult and VEDA is here to help, from finding information on balance and dizziness, finding a practitioner, finding vestibular support groups, and finding a diagnosis and treatment plan.
Please go to Vestibular.org for more information

Wednesday, January 2, 2019

Happy New Year ( let's start out on the right foot)

Happy New Year!! I want to start this 2019 off right. There have been some wonderful books that have helped guide me through this dizzy life. They did more than guide, they actually completely changed my entire outlook and helped me get my life back.


"How To Be Sick" is the most inspirational book I have ever read regarding chronic illness. Toni  Bernhard is an amazing woman and author. I highly recommend checking this book out. It saved me!!!

" Get out of Your Mind and into Your Life", is a wonderful tool that my chronic illness therapist recommended. It is a workbook, plus a guide of mindfulness and acceptance.