Tuesday, July 30, 2019

Being Invisible

Have you ever felt invisible? I think most of us have at one point or another. But have you felt the pain of no one believing you’re sick? .You don’t look sick, or why are you parked in a handicapped parking space when you’re not disabled? These insensitive statements can be debilitating to those with chronic, invisible illnesses. They can cause anxiety, depression, anger and self-doubt.

As an individual with an chronic, invisible disability I try to speak out against the bigotry that people give to us. I want to educate all that just because you can’t see it, doesn’t mean it’s not real. I cringe when someone calls another person a hypochondriac. How do you know? Are you in their body? Being a hypochondriac is an illness in itself. Yes mental illness is an invisible disability as well. My husband had me watch “Then Came You” about a man who thought he was dying. His twin had died years earlier which gave him a real fear. Yes, it was all mental, but a real fear nonetheless. This was a good movie if you want to watch it.

That’s me in the middle riding a dragon with an invisible disability!

Anyway back to my point... Who are you to judge whether or not someone is sick? Does it take any effort to be kind and considerate? In the movie, the man attends a cancer support group and is befriended by a young woman with cancer. She changes his life. It only takes one person to change someone’s life. So let it start with you.

Whether or not someone is sick is between them and their doctor. Most people with disabilities are not scamming the system. Believe me, they’d rather be healthy. People with chronic illnesses, can only hope to manage their symptoms. There is no cure. No we might not die from it, but sometimes we feel like it. What works for one, doesn’t necessarily work for another, so even the doctors are mystified about how to treat it. I had a great PCP, who said, “We’ll treat one symptom at a time.” Sometimes that’s all doctors can do is treat symptoms.

I went into remission from most of my invisible illnesses for about six years. It was heaven and I was able to go off most of my medication including reducing my asthma medication. I don’t know why this happened, but it was as if I’d been cured by diet and exercise. Thinking back though, I went into remission first and then I started eating healthier and exercising. It did not cure me, as I found out when the Ménière’s returned at Disneyland in 2017.

Now all my stuff are returning, with new stuff popping up. People have asked, “Why all of a sudden?” I cannot answer that except to say that is how Autoimmune/Chronic diseases work. One day you feel great and the next you are flat on your back too tired to get out of bed or too sore or too dizzy... I could go on and on about the way I feel on bad days.

So, why judge me on my good days? Do you know this was the first time in a month that my head was clear enough to drive? That I didn’t ache so I could go pick up my medication? Do you know how it feels to get one or two days a month where you feel almost normal? Just because I don’t show you the bad days, and unless you visit you’ll never see them, doesn’t mean I don’t have them.

Even on my so-so days when I venture out with my husband, you won’t see how my head is so fogged up that I can’t concentrate, or that I am struggling with the overstimulation of noise and lights. You might see me tip or stumble, if you are paying attention. Most people aren’t. Sometimes I need that cane to give me confidence to walk when I feel dizzy or off balance, even thoughI know if the vertigo starts it will not keep me upright. And the drop attacks come out of nowhere. I mostly get slammed backwards, so you may notice these or the ones where I am walking and it feels like my ankle forgets it has a job to do and I go down. But you will find reasons these happened. I have been called clumsy or careless. I am clumsy, but not in these instances. These are part of my illness.

Next time you see someone using that handicapped parking spot, or someone cancels plans, because they can’t get out of bed or are having anxiety, please be understanding. Many people with invisible disabilities feel isolated and indeed they are, because friends stop trying. I say continue to ask me to do things, but be patient if I have to cancel, it’s all part of being chronically ill.

I hope you are spin free.

Love, Peace and Light! Rita

Monday, July 22, 2019

World Brain Day

This morning I listened to a webinar on migraines on World Brain Day. Migraines are a brain disorder. The old thought was that they were a blood vessel problem.  I think that’s what they said. Maybe something about capillaries. 

It’s up to s to be our own advocates. Many of us with invisible disabilities already know that. Many of us know more about our diseases than our doctors. Even though migraine is one of the most common health concerns, it is also, not researched as much as other things.

Our doctors need to educate themselves and keep up on the latest treatments. As with many other chronic illnesses, migraines present differently for each person. One of the speakers spoke of a functional migraine, where you can still do things. This validated mine, because I often can still function, while other times I just want to curl up in bed in a dark, quiet room.

They spoke of the new class of drugs for migraine prevention as antibodies. When I looked it up, one of the treatments is Aimovig. Here is the article I found. It’s expensive, but would be worth it to have these daily migraines gone.

As a sufferer of migraines which have been daily lately, I hope this treatment works. I once had a three month month migraine that neurontin took away, unfortunately it made me sick. Hopefully, I will find some relief. I hope everyone finds relief. I know people are having success on  amitriptyline, and realize that may be the first option my doctor will want to try. Actually the triptan I take at the onset of a migraine was the first step, but it would get expensive if I took a one every time I have a migraine, which has been daily, so maybe in the long run trying the antibodies will be the way to go.

I hope you are spin free.

Love, Peace and Light! Rita

Monday, July 15, 2019


It is a great thing to be part of a support group. And it was an honor to be an admin, because I got to help other sufferers. If you know anything about me, that what I do. I went into Social Work to help others. That’s why I write these blogs. That is why I talk about my issues. It’s all to help others.

So, when I was booted out of a support group, I was devastated. The stress affected my balance, made me dizzy and even gave me mini spins. Thanks to many of the members whom contacted me to check on me, I woke up today feeling as if a weight had been lifted. I didn’t realize how much being an admin was affecting my psyche. Still I wouldn’t have left the group of my own accord.

So now I continue to do what I always do. I will try to help others. I am part of a newly created group with fabulous people in it. I will support people with invisible disabilities instead of just meniere’s. I am in other MD groups and I am okay with that. I can learn the latest news in one of these.

I have regrouped. If I know anything in life everything changes. I thought that I would be with the above mentioned group for longer, but it was not meant to be. I move forward in my quest to help others cope with their invisible disabilities. While educating others about them. In an old blog I used to research different autoimmune disorders and post about them. I think, for now, I will just post about my crazy life.

I hope you are spin free!

Love, Peace and Light, Rita

Friday, July 12, 2019

The Day After

I haven’t been feeling well since returning from Ireland. Between the almost daily dizziness and reflux due to hiatal hernia and costochondritis, I have been miserable. Still I suck it up to try to have a bit of fun. However, there are consequences, even though I rest up beforehand. I went to see Gwen Stefani the other night. An excellent show that I would have enjoyed more if it had not been for reflux so bad that I had to vomit.

Although I didn’t drink I felt like I was drunk. I went to bed dizzy, stumbling and foggy headed. I woke up still feeling drunk. I used up all my energy to enjoy myself at the concert. I still don’t feel better two days later. In fact, I feel worse. My hiatal hernia caused my costochondritis to flare, so I was in pain all night and couldn’t sleep. 

Today I feel like a zombie, but I am up. Not doing much, well I did wash my bedding. Life continues even though I feel like the living dead. Perhaps some brains might rejuvenate me. LOL! I see an early night for this dizzy, stumbling, sleepyhead.

I hope that I will feel better tomorrow, so I can enjoy my husband’s weekend. He is starting to be able to tell when I am not feeling well. Which is most days since we returned from Ireland. I need some good days, a remission would be better.

I hope you are spin free!

Love, Peace and Light! Rita

Saturday, July 6, 2019


California, near Death Valley, has had earthquakes the past two days. We felt it here in Vegas yesterday and some felt it on the Fourth of July. During yesterday’s, July 5, I got nauseous. Then it was over, but my head continues to feel like it is shaking.

Someone posted this link in my online support group about disturbances in equilibrium following an earthquake. I wonder if it’s worse for those of us with inner ear dysfunctions? Mainly it just feels like my head is bouncing as if the earthquake was still happening. It’s outside of what I am used to, and a bit unsettling. 

I think there are still aftershocks from last nights earthquake, maybe my head is picking up on them. Or maybe it rattled something in my inner ear. I don’t know, but I feel weird. 

I hope this feeling dissipates soon. And I hope there are no more earthquakes. Be spin free my friends!

Love, Peace and Light! Rita