Tips for Traveling with a Chronic Illness

Today began with me feeling dizzy & drunk. Yes, MD often makes me feel that way. It began about 3:30 am when my DH woke me. We showered and headed to the airport bound for San Antonio. 

Tips:

1. Preorder wheelchair assistance. Also, you get to board first. It helps on days like today when I am not too steady on my feet. You can tell your assistant to slow down if you’re getting motion sick. Boarding 1st means I don’t have to bounce off people going up the aisle.
2. Pack in advance. Make sure you have whatever you need to make your vacation fun. Rescue meds, medication to last the trip plus a few extra. I carry a folding cane in my backpack for days like today. 
3. Try not to stress out about the what if’s. In my experience it makes my illness worse. If I should have a vertigo attack or feel like today, I will take it easy and even take a nap if necessary.
4. Relax! You are on vacation or holiday after all, so take it easy. Don’t be rigid in your schedule. If you cannot do what you want or even everything you want don’t worry about it. 
5. Take lots of photos so you have memories. Not just of the places, but the people who are with you.
6. Make sure the people you are with know what to do if you have an attack. 
7. Have Fun! This is probably the most important thing. Try not to dwell on what’s wrong, but live in the moment. Laugh & enjoy! 

Despite how I felt earlier, I feel much better now. We have done a bit of sightseeing before checking into our hotel room. Now we are resting before dinner. Yes, resting, because if you have an illness rest rejuvenates. 

I hope you are spin free!

Love, Peace and Light! Rita 

5 Great Things

A very talented friend of mine asked her Facebook friends to tell her 5 great things. I decided this will make a great blog. I hope so anyway. 

I think is important to be able to find 5 great things in my life. If I can’t then my life needs improvement. Sometimes just getting out of bed is a great thing. With a debilitating chronic illness, it’s not always possible. 

It helps us to be able to assess and re-assess our lives. After living for years in the depths of depression, it is important to be able to find the great things in life. Because my depression is chronic I still fall into it, but I don’t stay there for long. Winter seems to be the hardest time for me. 

I used to be a pessimist who hoped for the best. I was never disappointed. Now I am more optimistic. Changing my mindset helped tremendously. I try to see the positives rather than dwelling on the negatives. 

Some people make this harder. I found its best to eliminate them from my life. It’s not always easy when those people are in your family, but I limit my association.

It’s like the old song says, “eliminate the negative... accentuate the positive. I like to start out my mornings thinking something positive. Something simple like, I’m lucky to have my husband. Sometimes, it’s I managed to get out of bed.

The meditation (autocorrect wanted to change that to medication) that I do has been helping tremendously to get rid of my natural obsession of focusing on negative things. I am still a work in progress. 

Here are my 5 great things:

1. My husband- I love him more everyday.
2. Laughter- without laughter eliminating the negatives would be next to impossible for me.
3. Travel- I have been blessed to be able to travel. It’s something I always wanted to do and even though I may need breaks because MD & FMS let me know they’re around, I still do it.
4. My Ménière’s Worldwide Family- I wish no one had to suffer from MD. it’s good that I have people I can talk to who really understand what I go through. I am lucky mine is not as bad as others. 
5. The Good Days- having a debilitating illness makes me cherish the good days. 

So there is my list of 5 great things and this is what I keep in mind on those days that I can’t get out of bed. They are gifts that I have been given and I need to remember to take the time to appreciate them. 

What are 5 great things in your life? Please feel free to tell me in the comments.

I hope you are spin free!

Love, Peace and Light! Rita

A Little Insanity

I found the best website for corn muffins. It’s called A Little Insanity. These muffins are so delicious I could eat them all day. 

Since finding out about my allergies to cows milk and wheat, I haven’t had many bread products. So this is a win for me. I did follow her recipe and used the eggs. I have a minor egg white allergy and didn’t feel like separating the yolks. 

I used the corn meal as I didn’t have corn flour. I had the dairy free butter & the milk alternative. I opted to use Soy milk over the coconut milk, because I didn’t want the coconut to overwhelm the corn taste. 

My cupboards are starting to hold things that I can eat. There is a lot of trial and error in my kitchen. Not all recipes are created equal. 

There is a bright side to being unable to have wheat or cows milk. Technically more than one. I have lost weight. I am down to 195 from over 215. It’s coming off slowly, but I think this is good. I may be able to keep it off this time. 

My scarf hides the too big neckline of my sweater. I think clothes should change to fit the body. LOL!

I am excited when I find things I can eat. Some Italian Restaurants have a gluten-free pasta alternative. Mexican always has corn tortillas. And I am finding fantastic recipes online. 

I hope you are spin free!

Love, Peace and Light! Rita

Laughter

Laughter is truly the best medicine. While it may not cure all that ails me, it helps me cope. Like getting photobombed by a goat. We wanted him to photobomb us. We had a lot of giggles trying to get this photo. 

Laughter also has the added benefit of releasing the chemicals that keeps depression at bay. Most people who have chronic illnesses are susceptible to depression. I have an ongoing battle with the fiend. Laughter helps me through it. 

I will be the first to admit that I have a warped sense of humor. Some people might not realize that I have one at all. Still I enjoy laughing. It takes special people to make me laugh. Fortunately, I am surrounded by special people. My husband and online support group. Ménière’s Worldwide is not for everyone, but it’s perfect for me. 

I am able to laugh at myself. This is important, otherwise I would cry. I mean bouncing off walls, bumping into stationary objects and tipping over are part of my daily life. I am able to laugh it off and make fun of myself. For instance when others see me tip and my arms go out, I say, “I’m practicing my ballet moves.” 

My advice is to surround yourself with people who make you laugh and don’t take yourself so seriously. If you can do this it will make life better. And if you have a chronic debilitating illness, it will make it more bearable. 

I hope you are spin free!

Love, Peace and Light! Rita

Thankful

Thanksgiving is this Thursday in the US so I thought I’d take a minute to tell you for what I am thankful. 

First of all my husband and the new experiences he brings to me. 

We watch baseball’s Astros, hockey’s Vegas Golden Knight and NASCAR. Who knew I’d ever enjoy watching sports? 

We travel by plane, car and cruise ship. Whether we’re camping, cruising or staying in a hotel, we enjoy ourselves. I have done so many new things and visited places I never thought I could. Ralph and I are on an amazing adventure together. 

I love my furry children. 2 dogs and 3 cats. Holly, Chewy, Renegade, Blitz and Lazarus. I am thankful to have them nearby to love and be loved.

I am thankful for my sister, brother and dad. All my nieces and nephews and my extended family. 

I am thankful for my ability to write and speak my mind. That I am able to advocate for myself and others with invisible disabilities. To write and speak about my own struggles and successes. 

I am grateful that I found a group with others with Ménière’s who understand what I am going through. I don’t know how I would have gotten through coming out of remission without the members of MWW. They were with me when I had a full blown episode in May and through all the mini spins and even when I had vertigo from my food allergies, giving support and advice. 

I am thankful for my life! 

I hope you are spin free.

Love, Peace and Light! Rita

Celebrating Life

It’s been beautiful in Las Vegas this November. Now it’s just light jacket or hoody weather. I have been feeling better than I have in months on most days. 

The Ménière’s and Fibromyalgia still inform that they are still around.

So today as I am about ready to face the treadmill for my stress test, I wanted to take a moment to celebrate life. I have a wonderful husband, pets and family who love me and I love back! 

I belong to a wonderful church community here in the desert. In Zanesville I belonged to one as well. I have a wonderful online support group on Facebook that allows me to talk with others who share my disease. 

I am blessed in so many ways. So I celebrate life today. Life is beautiful if you allow yourself to see the good around you. I try to look for the positives. I’m not always successful. 

So here is my moment today to say Thank You for this wonderful life. I will try to make each day more beautiful for those around me and to look for the beauty even on cloudy days. 

I hope you are spin free!

Love, Peace and Light! Rita

Occasionally

So Monday started off bad for my hubby. His tire was flat, so he took my car. My car is a pain since they “fixed” the ignition so it wouldn’t slip. It now refuses to give up the key. I know they can fix that problem, but I never got around to it.

It ended bad for him too. Somehow he broke his glasses as he changed the tire that evening in the dark. 

Tuesday didn’t start out much better, as the eye glass place he got his frames from couldn’t repair them & didn’t have that style anymore. We both have appointments for Tuesday. Unfortunately, it will probably be a week before he gets his new glasses.

I dropped him at work and proceeded to Discount Tire to repair the tire. I (we) was fortunate to be spin free, so I could drive. They were busy so I didn’t get out of there until 11:30, so I went to Cafe Rio to get a bowl. Then home to conserve energy so I could pick Ralph up from work so we could go to the Vegas Golden Knights game. Still no spins!

We drove to Born and Raised to catch the bus. It’s so much easier & cheaper than parking near T-Mobile Arena!

The game was awesome especially when #14 in the Ducks helped us make a goal. Our team was working together and playing like a well oiled machine. 

We shut the Ducks out. Here is a compilation video of some of the highlights before and during the game. As you can see the stadium was packed. Sorry Duck fans! (Not Sorry) Some of the cheerleader came up to our section for a period. I think my husband was in heaven. 

The best part of the day is that I only had two mini spins (1 rotation each)! It was the best day I’ve had for awhile. And as I lie here in bed writing this I still haven’t had my usual morning wake up calls of mini spins. So, you see occasionally this disease gives me good days. 

I hope you are spin free!

Love, Peace and Light!

Rita

Back in Vegas

Our late flight gave us the opportunity to visit Boa Vista Orchards yesterday, Sunday. We had a lovely drive through some fall foliage. 

Fall foliage is one thing I miss in Vegas. Our fall is so late and then the temperatures just drop causing the trees to do the same without much color. There is some color change, but not as much as other places. Probably because we are a freaking desert, and not supposed to have trees.

The market was bustling with activity on the lovely fall afternoon. I wore a light jacket, though Ralph wore shorts and a tee. His Goat House Brewery purchase. 

 

I vlogged for The Ralph and Rita Show as we browsed. We bought honey, apple wine and of course apples. And the traveled safely home in our suitcase. I purchased a reusable zippered freezer bag at the grocery store. Did you know California you are charged if you was disposable plastic bags?  

We stopped on our way back at this little restaurant. I loved it the first time when I didn’t have food allergies. My allergies limited me to sandwiches without the bread, salads or tacos without cheese. Still my steak sandwich was filling if lacking for flavor. Thank God for Worcestershire sauce. You can read my short review on Yelp. 

Then we returned to MaryLu’s house to relax until our flight. We took Lyft to the airport. 

This weekend was particularly bad for Ménière’s. I don’t know if it was the late flights, the smoke in the air or the drop in temperature. Maybe a combination of all three. I pushed through, but also, took a lot of down time. I sat in the car while Ralph went to see the salmon at the hatchery. I went to bed early on Friday. 3:30 pm. And took a nap on Saturday before church. 

I am home now snuggled in bed with the dogs as I write this. Thinking of just staying here until my stomach calls me out of here. 

I hope you are spin free.

Love, Peace and Light! Rita

A weekend in Sacramento

We flew in late Thursday night from Las Vegas and after talking to Aunt MaryLu, we went to bed. Ralph and I were up bright and early to take his Aunt to see her trust lawyer. 

Then we stopped for lunch at El Tapatio’s. Delicious enchiladas for lunch for all three of us. 

Pair that with a late flight, and a little grocery shopping and I was wiped out. Before I could head for bed, Ralph had to stop a Moehler Egg Farm for some fresh eggs.

I went to bed around 3:30 pm. Only surfacing for short vertigo attacks and bathroom breaks. I didn’t wake up (for real) until 5 am. My sleep is always spotty. 

My dear husband prepared chili and breakfast while I attempted to regain my balance. We headed to Goat House Brewery, because my dear husband wanted to see the goats and have some beer. It’s good that I checked, because there beer is made with wheat. The goats were adorable. I am wiped out, so I am sitting in the car while Ralph is visiting a hatchery where the Salmon are coming up. We’ll have a video of his adventure on our YouTube Channel, The Ralph and Rita Show. In fact, the Goat House Brewery will be on it too. 

It’s cool in Sacramento, and lovely. The nearby wildfire that took out the entire town of Paradise is making it smoggy, so the skies aren’t as blue as they should be. 

I hope I’ll make it to church, but I truly am not feeling well. Stinking Ménière’s as Ralph would say. 

I hope you are spin free.

Love, Peace and Light! Rita

Trying to Find my Zen

I have been feeling stressed lately. It’s difficult to feel  Calm when my heartbeat is fast. Even when I am still in bed it 96 BPM. When I start moving it will be well over 100. So my sign to stop the anxiety, which is increased heart rate appears to be broken. 

Before you ask, yes I am going to a cardiologist in January. First I have a series of test. I had an echocardiogram, next week is a stress test and in December I get to wear a halter monitor. I wasn’t concerned about my pulse, because I thought it was my Mitralvalve Prolapse. It wasn’t until an actual MVP attack that sent me into vertigo that I became concerned. Hence all the testing.

In the middle of this I found myself in some drama. Maybe I created more in my mind than there needs to be. It sucks when I find myself replaying things over and over. Anything I perceived I did wrong or that others did, replay because of anxiety. This is what we called racing thoughts when I was a social worker. 

So I am beginning to meditate again. Thanks Father Bill at Holy Spirit for reminding me. I am doing things I enjoy like walking in beautiful gardens like at JW Marriott, when I am able. Multiple vacations help me relax. And I repeat my mantra over and over. 

My mantra or prayer (The Serenity Prayer):

Grant me the serenity to accept the things I cannot change.

The courage to change the things I can.

And the wisdom to know the difference

Hopefully this will lead to a less stressed more thoughtful me. I need to live in the now and forget about the past and stop worrying about the future. I’ve already had one of the worst things any wife can endure... I made the decision to not resuscitate my husband after his third heart attack in less than 24 hours. And I made it through. 

It dawns on me as I am writing this that from September 22 (My late husband’s birthday and our wedding through Christmas, he died on December 20, 2012) are still very tough times for me, so my emotions are all over the place. 

I really need to be mindful that not only do I have this, but that due to fall/winter I get less sunshine and seasonal affect disorder will kick in. 

So, I am off to find my Zen, through meditation, movement and writing. 

I hope you are spin free.

Love, Peace and Light! Rita

The Balance Act

Living with an inner ear or vestibular issue, balance can be difficult. It’s possible to be off-balance without others realizing it. I tip a lot. That’s right I tip, my arms go out to try to rebalance me. I joke when someone sees that I am practicing my ballet moves. 

Life is all about balance. Find what works for you.

You have to be able to laugh when you have a chronic illness. My late husband taught me to find the humor in any situation. Laughing also helps keeps the blues away. (Not always when you have chronic depression and anxiety.) I think it tricks the brain. 

If you have Ménière’s or some other Vestibular problems, I highly recommend Vestibular Therapy or Physical Therapy. It helps train your brain to compensate. It also teaches you to recognize panic/anxiety attacks that make the actual Vestibular problem worse. This for me was a godsend. 

So how do you live when you have a chronic disease? I know that when I make plans, plans may have to change as I never know from day to day if I’ll be able to stand. Or overdoing it may put me in bed for a couple of days after. (I have fibromyalgia too.) 

Knowing this is half the battle. You and whoever you’re with need to be aware. It helps take some of the stress of disappointing others away. Remember stress makes things worse. This past weekend we brought a friend along in case I couldn’t keep up, So Ralph would still be able to enjoy himself. 

Being spontaneous is good too. If you are having a good day ask your partner or friend if they want to do something. Tell them that you feel great and want to get out. 

Of course there are days when my balance is all over the place, but my head feels good. I use a cane for these times. If I am hiking I have a walking stick. Both are fabulous aids and give me a sense of security. Again it takes some stress away. 

When you have chronic illness(es) you have to pick your battles. Plan for a day of activity and then a day off to recover. If you are already having A bad day say so... Don’t push it. I made that mistake when I came out of remission. And I got sick in public after going on Space Mountain. (A ride I doubt I’ll ever go on again.) 

Unfortunately, we are able to cover up how we are doing so well that others may not know we are struggling. It is our duty to ourselves and others to let the people around us know. 

I have been lucky to never have had a full on vertigo attack in the day. At least it begins when I wake up usually in the middle of the night. It would be impossible to hide how I feel when I have one of these. It’s hard to describe, but it feels worse than being drunk and your balance is null. It takes two to three days for me to fully recover.

Notice my blue light filtering glasses and my cane. 

There are other props that come in handy for Vestibular issues. I wear or bring my blue light filtering glasses and ear plugs with me wherever I go. Lights and noise can be a trigger, so it’s best to try to be proactive with your triggers when you can. I would love to hear how others deal with their triggers, besides avoidance.

Also, I always bring my meclizine with me. I take it if I have a mini spin (a really short vertigo attack) or if I feel lightheaded or dizzy, especially when I am doing something. I try not to take it daily as I don’t want my system to become accustomed to it. 

So you see you can do things while having a Vestibular issue. You may not always be able to do things when you want or as much as you want and there may be a day or more of payback, but it is worth it to me. 

I took this shot from the car. It’s possible to find ways of doing things without really stressing your system. I am lucky that I don’t get motion sickness

Find what works for you, but please don’t give up, because there will always be good days. I know it doesn’t always feel like it. I spent a couple or three years in bed because of Ménière’s and Fibromyalgia. I didn’t have any energy. I only got out to visit family. Fatigue is something you can only overcome by doing things. 

I hope you are spin free.

Love, Peace and Light! Rita