Rare Disease Day

First I want to send hugs to all who have a rare disease. I wrote this on my Facebook timeline, but need to share with you.

Meniere’s Disease is a rare disease, so much so that doctors don’t know what causes it or how to cure it.  It is characterized by vertigo, dizziness, tinnitus, ear fullness, drop attacks I and deafness.

It is unpredictable with good days and bad days. I look normal even on not so good days. Though you may notice that I tip or stumble or walk like I’m drunk. I have more of these days then even the people closest to me realizes.

On my not so good days, when my ears are full and the tinnitus is loud, my brain feels cloudy. I have trouble concentrating, I carry on especially for fun things. Sometimes I let people know how I feel, just in case it turns into a full vertigo attack.

I have been fortunate not to have had a vertigo attack in public. Mine are usually when I awaken.  I have had mini-spins (one or two rotations) in public, also, wavy walls or shifting floors.

Even on good days the tinnitus is present as are the balance issues. I try to limit my salt intake, which helps with the loudness of tinnitus. It doesn’t seem to affect the vertigo.

As I learn my new normal, I try to enjoy every minute that I can. I have had this disease since before my diagnosis in 2000. Then I had frequent bouts of vertigo and slam attacks. I went into remission around 2012, but came out of remission at Disneyland in 2017. So now I am learning about it again.

My last full vertigo attack was in May of 2018. My diuretic seems to be keeping even the mini vertigo attacks at bay, though occasionally I feel as if my head  went on a quick trip around the room. I have coping mechanisms when out having fun... including ear plugs for hyperacusis, blue light filtering glasses and I rarely do things on my own, unless I am having a really good day. Even then I am not far from home. One thing is certain is that I will survive.

I hope you are spin free.

Love, Peace and Light! Rita

Valentine’s Day

Valentine’s Day is a day for lovers everywhere to express there love. It is also a day I looked forward to when I was a kid. You remember making your Valentine boxes so all the other kids could put their cards for you in it. I love LOVE! There can never be too much love. 

So what if it’s a created holiday to sell cards and candy. Use this day to remember those you love, especially yourself! Self-love is the most important love there is. Without self-love you can’t fully love someone else, because you’ll always have that niggling thought at the back of your mind that you’re not worthy. I want you to know that you are worthy and deserving of love. So start replacing negative thoughts with positive ones about yourself! 

And for Valentines Day remind yourself to love yourself and others. Everyone deserves love! Keep that in mind today and everyday! Happy Valentine’s Day to everyone reading this. 

I hope you are spin free!

Love, Peace and Light! Rita

Author

Occasionally someone will remember that I write and have published a children’s book, even though I’m not writing much other than my blogs. Today is one of those days... a friend asked me to read and talk about what inspired me to be a writer for a group of kindergarteners through second graders. Despite my health issues, I said yes. I may need a driver, but I will be there.

I just ordered some bookmarks to pass out to the kids. Hopefully, there won’t be more than 100 kids. I must say I’ve never spoken to a group that large. Kids can be tough audiences or they can be truly awesome. 

Now I just need to figure out what to talk about. LOL! I will probably say that I have been writing stories since I was in elementary school. Push my favorite book series... The Wizard of Oz and Little House on the Prairie books made me want to invent my own worlds. 

I will talk about my love of reading and the ability it has to transport the reader into different times, places and experiences. Hopefully, I can awaken the love of reading in this new generation. 

Now I just need to stay calm and remember to talk slowly and to enunciate my words so the children can understand me. 

Wish me luck. I hope you are spin free!

Love, Peace and Light! Rita

Appreciate Life

One thing living with a debilitating disease has taught me is to enjoy life. Yes, I may have to cancel some things due to this disease, but it’s no different than having the flu. The difference is that I appreciate every single good day I have. It does pay to be flexible though.

Having friends and family who are supportive helps tremendously. There were several months, nearly a year, that I couldn’t drive. And friends and family helped me get around. Taking me back and forth to doctors appointments, getting me out of the house. Without them I would have become housebound, because even taking a walk can be frightening when you’re dizzy all the time.

My point is on the good days, even some dizzy days I try to have fun. Most importantly I appreciate each show, each lunch or dinner, each trip and every moment that I am not dizzy. I even appreciate the dizziness and general lightheadedness, since it’s not vertigo. Vertigo is the hardest part of this disease to deal with for me. Some attacks cause severe after affects that last a couple of days for me.

 I really do appreciate the days without vertigo. Sometimes my natural grumpiness emerges and I may not seem so thankful, but I am. I am working on becoming a more peaceful me. I am a work in progress and I am continually changing. I am thankful that I can work on me.

I am choosing to be happy and I appreciate all the good days. Sometimes I may just need to be reminded of this.

I love my life. I hope you are spin free!

Love, Peace and Light! Rita

Living Despite Meniere’s

I think living with a debilitating disease is often about timing. I know I feel better during the day than the evenings. So if I want to do anything it’s best to plan daytime activities.

Now that’s easier said than done, since most of my friends have jobs. It makes socializing harder, but not impossible. I just need to make sure I have a ride if I do evening activities. That’s what husband’s are for...

There are some days that I may have to cancel plans. It would be nice if my disease was predictable, but it’s not. If it’s frustrating for others, think about how I feel. I do not like being housebound. Not being able to drive is difficult. Even on good days I have to figure out how bad the brain fog is affecting me. Today it’s not so bad, but I still began to cook my oatmeal without water.

Imagine if I am driving and I see a squirrel.  🐿  Okay, not really a squirrel, but anything that takes my focus off what I am doing. I could put others in danger as well as myself. So, I rarely drive anymore.

I am fortunate that my brother lives with me and can take me to appointments if my husband cannot. Oh and Uber and Lyft are viable ways to get around.

The days I get out and enjoy myself make it easier to cope with the bad days. Anxiety and Depression are part of life for me, but I continue on.

I have lost 15 lbs in 5 months, because I had to stop eating wheat 🌾 and cows 🐄 milk. It cuts out so much of my previous diet. Strangely enough, I am not constantly hungry since eliminating my food allergies. And I can still have meat, fruit and vegetables.

My husband gave me a Simply Fit Board for Christmas which is helping me get into shape and it also helps with my balance. On bad days I cannot do it at all. It’s kind of funny watching me try to do the twist or even stay of the board. On good days and even my first time on it, I have no problems at all. I think because my brain is already working to keep me upright.

As I get healthier, I am feeling better. Being healthy is not a cure, but it does benefit most of what ails me. For instance, my knee isn’t causing me as much pain since dropping 15 pounds.
I refuse to give in to this disease, but I know there are days that I must. It’s all about balance and realizing that not everything is possible.

I hope you are spin free!

Love, Peace and Light! Rita

Thinking

Ouch that hurts! LOL! Seriously, though... I want to write a nonfiction book. It’s a bit frightening to leave the worlad of fictional monsters to write about me. 

I want to use my experience in living with chronic illness as a basis for a book. I don’t know if anyone would want to read it. The reward will be in helping others. Even if only just one person is helped by my experiences then it will be worth it. 

Now do I pitch the idaa to publishers or just write it? I know publishers of nonfiction prefer to be pitched the idea and an outline. But if I write it first and then pitch the idea, I won’t have to stress about making deadlines.

Decisions... The ideas are flowing so I will probably be able to put together an outline. Since it’s not fiction, I will not be able to use my usual pantser method. 

I have to do one thing that all writers need to do... Put butt in chair and fingers to keyboard. So, I am thinking of a book about living with chronic illnesses. I will be putting me out there for all to see. Can I do this? I don’t know, but I am going to give it a shot. 

I hope you are all spin free!

Love, Peace and Light! 

Uncluttering

It seems the trend right not is to declutter. People are determined to downsize their lives by getter rid of things they don’t use or need or doesn’t make them happy. I have been slowly getting rid of clothes that do not fit. Thank God I didn’t get rid of all my smaller sized clothes as I am loosing weight.

The real thing I want to work on is uncluttering my mind. This is not as easy as it seems for someone with anxiety. Everything plays in my mind over and over. 

So my solution is to try to deal with it through humor. I made this meme because someone called me a bitch, because I called them mean.  And now I have as little to do with this person as possible, bless her heart. 

So I guess what I really am doing is cutting out the negativity in my life. Kind of hard when I have a knack of being negative myself. But since I can only change me, that’s what I am choosing to do. 

The Serenity Prayer has been my mantra for years, so I will continue to repeat it as often as needed. 

God, grant me the serenity to accept the things I cannot change,

Courage to change the things I can,

And wisdom to know the difference.

I am choosing to focus on me and the things that make me happy. I am choosing to eliminate negativity from my life and if this is in the form of people then so be it. It may not be a popular position, but I feel it’s a necessary one. 

So though I don’t make resolutions, I am working on me. I always am working on me. I am a work in progress.

I am still always going to be real, though I don’t go out of my way to hurt others, I also, don’t shrink from calling others out on their bullshit. I certainly won’t tolerate snide comments or backstabbing. I will call it out, but don’t worry because I have no qualms about cutting whoever out of my life. 

This is for me and the happier me that I envision. I think by being truer to whom I want to be my husband will be happier. And that to me is the most important thing in my life. 

I think this is something we all can benefit from. I hope you are spin free.

Love, Peace and Light!  Rita