Spring Break Adventures With The Family And Tips For Traveling With Chronic Illness

traveling with chronic illness
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Hey guys! I’ve been out of the blogosphere for a few days because we took the family on a little spring break adventure to Florida.

I’ve missed being in touch and posting, so I thought I’d share a bit about our trip to let you know what’s been going on in my world.

I took my laptop on the trip thinking I’d write along the way, but between being so busy and feeling pretty wiped out from the fast pace, it simply didn’t happen.

David and I agreed it was one of our favorite trips with the kids yet. I was so thankful the boys could come because they’re often busy with work or other activities like college kids are.

Every family has their own vibe and when we all get together, there’s usually a lot of laughter, and with the 6 of us, things can get pretty loud.

We all love music, joking around, the occasional debate (some more than others-ha!), and having fun.

Spring Break, 2017

traveling with chronic illness
MO State Basketball – David and the girls

The weekend before our flight left for Florida we’d been in Columbia, MO for the Class 4 State Basketball Tournament where our Bolivar High School boys played in the championship game.

They played hard and did a great job!

We went back home for a night and repacked for Florida.

The next afternoon we flew into Orlando and moved into our hotel near SeaWorld.

Universal Studios, Islands Of Adventure

We woke up early the next morning, ate a big breakfast and headed to Universal Studios, Islands of Adventure.

traveling with chronic illness
The kids at the Harry Potter castle.
traveling with chronic illness
Sweet Emma enjoying a Butterbeer.

Drew and Cooper have read the Harry Potter books and seen the movies, and Maddie and Emma have read and seen some too, so this was definitely something they wanted to check out!

Some of the kids even tried the Butterbeer.

We rode ALL the rides we were interested in riding and then some. Thankfully we all love to ride roller coasters so no one was left out and it was a blast. 🙂

Talk about a G-force extravaganza!

And we did a lot of walking! At the end of the day my fitbit said I’d taken over 15,000 steps!

traveling with chronic illness
Cooper trying Butterbeer.
traveling with chronic illness
David and Drew at Universal

Wowza!

By 5:00 we’d conquered all the rides and had such a fun and full day.

We were hungry! So we headed out to Freddy’s for giant burgers and fries and frozen custard (because vacation ;)).

Then back to the hotel to crash around the pool and go to sleep.

SeaWorld

Rest.

Rinse.

And Repeat.

Woke up early. Ate a big breakfast. Headed to SeaWorld first thing.

traveling with chronic illness
Love them.

SeaWorld has changed so much since when D and I were kids. I thought it was pretty cool then, but they have some of the best coasters now, including Mako, Kraken and Manta.

The weather was gorgeous! The lines to the rides were short. I don’t think we had to wait more than 10 minutes to ride anything so we were loving that!

Plus, the shark aquarium is super cool and the Antarctica penguin exhibit

traveling with chronic illness
Coop and penguins

is so fun! Are penguins not the cutest little birds?!

We talked to some beautiful parrots…”Polly want a cracker?”

And petted the stingrays. The leopard print ones were my favorite!

We saw several shows, all of them entertaining and impressive

  • dolphins
  • killer whales
  • sea lions  (arrr, arrr, arrr!)
traveling with chronic illness
Not sure what this is about, but I like it. 😉

Overall, it was another super-fun day! And my fitbit said I had walked

about 14,000 steps….much more than I’ve done lately. Thankful.

But, whew, was I feeling the burn!

We were all hungry for dinner and went to Moe’s and filled up on giant burritos and burrito bowls made with fresh ingredients, including cilantro lime rice and guacamole (my personal favorite).

Then back to the hotel for some relaxation by the pool until we were ready to turn in for the night.

Tips For Traveling With Chronic Illness

If you or someone you love have a chronic illness, you probably understand how difficult traveling can be.

For me, traveling is one of my favorite things to do. I love the beach and won’t pass up an opportunity to go if humanly possible.

But since getting Lyme disease and a host of related medical issues, traveling is often challenging in ways that I never considered before when I was healthy.

I love to be on the go and be involved and it really bums me out when I can’t keep up with everyone else (but it won’t stop me from trying).

Even so, there have been plenty of trips when I’ve been stuck in the hotel room with a migraine, or in too much pain or too exhausted to move, etc. I can definitely be pretty stubborn when it comes to accepting this and have a lot of work to do in this area. But trust me, I get it. It really stinks to be shut in when everyone else is out exploring and having fun.

But then again, I’m praying and working towards recovery of my health so I’m not willing to give in.

I’ve learned the hard way plenty by overdoing it (as I’m sure many of you have too) and then spending a week or more recovering flat-out exhausted.

We all make our choices I suppose.

But you know what? You only live once, and (assuming your doctor hasn’t put restrictions on your activities) sometimes, to me, it’s so worth it to have to take a few days off to recover when I return from a trip.

Like right now, I’m wiped out, but I’m thankful to be able to write this blog post.

This particular trip I made the mistake of forgetting my turmeric curcumin supplement I take for  body pain.

Nothing is perfect, but if we can learn to go with the flow it helps!

Tips To Help When Traveling With Chronic Illness

  • Pack your medicines, supplements, etc. ahead of time to make sure you have everything you’ll need. Research the area you’re visiting. Not to be a Debbie Downer, but do they have a hospital nearby in the case of an emergency? It’s good to be prepared.
  • Communicate with your family or friends you’re traveling with. Be honest about your medical limitations and how you’re feeling.
  • Give yourself grace! You probably won’t be able to do everything you want to do but that’s okay. This is the hardest concept for me but I keep repeating it to myself and it really helps.
  • Be thankful for the small things. Focus on the positives. They are always there. Sometimes we just have to look a little harder to find them.
  • Keep a gratitude journal. I’ve found the more I’m aware of all I’m grateful for, the less I’m aware of the frustrations that come with my illness.
  • Show kindness to your travel companions. Say thank you. When you’re not feeling well it’s so easy to forget this, for me anyway. Try to remember that your illness is not only difficult for you, but can be hard on your loved ones too….because they love you and care about you and want you to feel better.
  • Drink lots of water! Eat healthy, whole foods.
  • Move your body. Gentle stretching is wonderful. If you’re up for a short walk that’s great too.
  • Get some fresh air. Take in the sunset in a comfy chair. Go barefoot outside.
  • Be flexible when scheduling outings.
  • Have fun!

    traveling with chronic illness
    Push ups by the pool

The Takeaway

Thanks for letting me share about our family trip with you!

We’ve enjoyed plenty of “staycations” and they can be super fun too, but I’m thankful it worked out for us to get away together this time.

I want you to know that if you enjoy traveling like I do, you don’t have to give it up just because you have a chronic illness.

Remember to be prepared, honestly communicate how you’re feeling with your travel buddies, give yourself grace, be flexible with your travel plans, focus on the positives and get some fresh air.

Do you enjoy traveling? Do you or someone you love have a chronic illness? What tips would you add to this list?

Please share your thoughts in the comment section below. I love hearing from you and will reply to your comments as soon as possible!

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Why Do People With Lyme Disease Not Catch Colds And The Flu?

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So, as I write this I’m living in a house full of sick people.

Completely surrounded by influenza.

And contagious germs.

Caring for all of my ailing family members.

And I’m thankful for one thing Lyme disease might be good for….preventing me from catching colds and, in this case, the flu that otherwise “healthy” people get.

Seriously.

Ever since I’ve had Lyme I can be surrounded with a highly contagious illness, but over and over rarely, if ever get “sick”.

If you have Lyme, you know this is a small consolation considering everything else we deal with, but each little thing helps, right?

I mean, we may end up going to the doctor, emergency room, or hospital for a number of other Lyme-related health problems, but if I can bypass the colds, flu, and other assorted viruses out there….I’ll take it.

For now anyway.

Interestingly, a friend who has Lyme told me her doctor was encouraged when she started catching colds and viruses her children would catch at preschool. He said this was a good sign.

But why, I want to know?

Does it mean her immune system is beginning to work like it’s supposed to again?

Why Do (Some) People With Lyme Disease Not Catch Colds And Flu?

I’ve researched this strange phenomenon online and have found many fellow “Lymies” who have the same experience. But I’ve had a hard time finding any concrete explanation for why this happens.

So if you know can you please share with me? 🙂

We’re told by our doctors that our immune systems are messed up, so I’m guessing this has a lot to do with it.

But is it because our immune system is so weak and worn down from trying to fight the Lyme and co-infections?

Or perhaps our immunity is in overdrive and simply wipes out every invader that comes close. But, if that were true, would we even have Lyme in the first place?

Or, here’s another thought. Because many of us have felt like we’ve had the flu every day since we were infected with Lyme disease maybe we can’t recognize a “little” cold? (I’m not implying a cold is little, just using it as an example.)

So many questions. Please help!

As a sidenote, I’ve read on some message boards that people with MS and a few other autoimmune conditions experience this same crazy phenomenon.

The Takeaway

If you have Lyme or know someone who does, do you still catch colds and other illnesses or not? Have you read or heard a good explanation for why this happens?

Please share your thoughts and opinions below in the comment section. I’d love to hear what you have to say! Hopefully we can all help each other figure this out. 🙂

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Changing DNA To Eliminate Lyme Disease: Could It Be The Answer?

eliminate Lyme disease

A recent article in The New Yorker entitled, “Rewriting the Code of Life” focuses on an interesting idea, originating from a young MIT scientist, Kevin Esvelt. He believes a person’s DNA can be altered to make them immune to certain diseases, like cancer and Lyme disease.

As strange and futuristic as this may sound, testing has already begun.

So is this a legitimate way to eliminate Lyme disease? Here is what The New Yorker had to say:

Esvelt, who is thirty-four, directs the “sculpting evolution” group at M.I.T., where he and his colleagues are attempting to design molecular tools capable of fundamentally altering the natural world. If the residents of Nantucket agree, Esvelt intends to use those tools to rewrite the DNA of white-footed mice to make them immune to the bacteria that cause Lyme and other tick-borne diseases. He and his team would breed the mice in the laboratory and then, as an initial experiment, release them on an uninhabited island. If the number of infected ticks begins to plummet, he would seek permission to repeat the process on Nantucket and on nearby Martha’s Vineyard.

More than a quarter of Nantucket’s residents have been infected with Lyme, which has become one of the most rapidly spreading diseases in the United States. The illness is often accompanied by a red bull’s-eye rash, along with fever and chills. When the disease is caught early enough, it can be cured in most cases with a single course of antibiotics. For many people, though, pain and neurological symptoms can persist for years. In communities throughout the Northeast, the fear of ticks has changed the nature of summer itself—few parents these days would permit a child to run barefoot through the grass or wander blithely into the woods.

“What if we could wave our hands and make this problem go away?” Esvelt asked the eliminate Lyme diseasetwo dozen officials and members of the public who had assembled at the island’s police station for his presentation. He explained that white-footed mice are the principal reservoir of Lyme disease, which they pass, through ticks, to humans. “This is an ecological problem,” Esvelt said. “And we want to enact an ecological solution so that we break the transmission cycle that keeps ticks in the environment infected with these pathogens.”

There is currently no approved Lyme vaccine for humans, but there is one for dogs, which also works on mice. Esvelt and his team would begin by vaccinating their mice and sequencing the DNA of the most protective antibodies. They would then implant the genes required to make those antibodies into the cells of mouse eggs. Those mice would be born immune to Lyme. Ultimately, if enough of them are released to mate with wild mice, the entire population would become resistant. Just as critically, the antibodies in the mice would kill the Lyme bacterium in any ticks that bite them. Without infected ticks, there would be no infected people. “Take out the mice,” Esvelt told me, “and the entire transmission cycle collapses.”

I wish Kevin the best with his testing and hope the results are successful and far-reaching.

The Takeaway

In closing, this method may hold promise to eliminate Lyme disease. It has also been criticized, however. There are ethical and environmental considerations at play here.

Most importantly, let’s not forget the hundreds of thousands of people living the debilitating effects of Lyme each day with no relief in sight. Furthermore, they deserve immediate relief. We must keep moving towards finding a cure for Lyme disease.

What have you read about altering genetics and Lyme disease? Do you think this is a good idea or not? Please share your comments below in the comment section. I love hearing from you and will reply as soon as possible. 

Finally, if you’d like to learn more about Lyme disease you might want to check out:

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16 Vital Facts About Lyme Disease: A National Epidemic

facts about Lyme disease

People are talking more about Lyme disease lately. And with good reason.

A bacteria called Borrelia Burgdorferi causes Lyme. The bacterium is a spiral-shaped spirochete. Try saying that 5 times fast.

But joking aside, Lyme disease is no joking matter. In fact, it’s a serious topic for any of the millions who have it or have had it.

It is a world-wide disease and it has been reported in all 50 states.

So, here are 10 essential facts about Lyme disease–what you need to know:

Facts About Lyme Disease

  1. Lyme disease is a national epidemic. Over 300,000 cases of Lyme disease are reported each year according to the CDC. This is 10 times more than previously reported. Furthermore, Lyme is under-diagnosed and under-reported.
  2. It is called “The Great Imitator”. This is because it can mimic other conditions such as arthritis, Chronic Fatigue Syndrome, fibromyalgia, Bells Palsy, ALS, Parkinson’s, Alzheimer’s, MS, ADD, Lupus and others.
  3. Less than 50% of Lyme disease patients recall a tick bite. The ticks are often the size of a poppy seed and go undetected. (1)
  4. Less than 50% of Lyme disease patients recall a rash. Despite what you may have heard, many people never get a bulls-eye rash. Some may experience other types of rashes, but many don’t recall a rash at all. (2)
  5. Lyme disease affects 6 times more people in the U.S. than HIV/AIDS, yet it receives less than 1% of the funding. And Lyme is nearly twice as common as breast cancer. Yet insurance doesn’t cover long-term treatment for chronically ill Lyme patients. So they have to pay out-of-pocket for expensive treatments. As a result, many cannot work anymore and have lost their homes simply trying to pay for proper medical care. Something is very wrong with this picture.

    facts about Lyme disease
    Ticks can be as small as a poppy seed.
  6. According to the CDC, Lyme disease is the fastest growing vector-borne disease in the U.S. Vectors include ticks, mosquitoes, flies, parasites, sandflies, fleas and freshwater snails.
  7. Anyone can get Lyme disease. But children and those with lower immune function are the among the most susceptible. People exposed to mold, parasites and systemic infection are also vulnerable.
  8. There are 5 subspecies of Borrelia Burgdorferi (the Lyme spirochete), over 100 strains in the U.S., and 300 strains worldwide. (3) And the really crazy thing is that these spirochetes are adapting to the environment. They can actually change forms to evade antibiotics. The different forms include cyst form, cell-wall-deficient form and spirochete form.
  9. The number of cases of Lyme reported annually has increased nearly 25-fold since national surveillance started in 1982. (4) And that doesn’t even include all the unreported cases.
  10. Lyme disease is transmitted by a tick bite. Ticks are everywhere. They know no borders. So if you are sick and have Lyme disease symptoms please go to a Lyme-literate doctor. Here is a link to help you find a doctor who specializes in treating patients with Lyme disease. Also, spirochetes were found in mosquitoes and horse flies, according to Willie Burgdorfer, the man who discovered Lyme disease. However, they don’t yet know the rate of transmission. (5)
  11.  The most commonly given test for Lyme is the ELISA test. But, it is unreliable and misses 35% of culture-proven Lyme disease. (6) Currently, the most sensitive test is the IgG and ImG Western Blot tests, available through IGeneX Lab in Palo Alto. www.igenex.com.
  12. People who often spend time outdoors are more likely to get Lyme. If you spend time working outside in the grass or woods apply a natural tick-repellent before going out. And make sure to be extra vigilant to check for ticks when you come inside. Also it’s best to remove your clothes as soon as you come in and wash and dry them. Finally, check thoroughly for ticks before taking a shower. This may sound like a lot of work, but it’s so much better than the alternative.
  13. Test for other tick-borne illnesses too. Examples of these co-infections include: Babesia, Tularemia, Anaplasma, Bartonella, Rocky Mountain Spotted Tick Fever and Ehrlichia. If any of these or others are present and left untreated it reduces the chances of successful Lyme disease treatment. (7)
  14. No studies show 30 days of antibiotic treatment cure chronic Lyme disease. According to ilads.org, “Short treatment courses have resulted in upwards of a 40% relapse rate, especially if treatment is delayed.” (8)
  15. When first getting bit, common symptoms include: flu-like symptoms, headaches, dizziness, fainting, fatigue, muscle pain, vision problems, nausea, loss of appetite, swollen glands, rashes, neck stiffness and pain, trouble sleeping, chills, sweats. You may want to read The Signs, Symptoms And Stages Of Lyme Disease for more details.   
  16. Lyme can cause long-term complications when it’s untreated. And, unfortunately, the average Lyme disease patient sees 5 different doctors over the course of about 2 years before being diagnosed. This was my experience too. By this time, the disease has done tremendous damage to the body and patients often end up having long-term health problems. (9)  At this point it is called Chronic Lyme Disease, or sometimes called Late Persistent Lyme Disease. Symptoms include:
  • Extreme exhaustion not relieved by sleeping or resting
  • Inability to control facial muscles
  • Heart problems, such as pericarditis
  • Tingling and numbness of the hands and feet
  • Arthritis, often in the larger joints, such as the knees
  • Short-term memory loss
  • Confusion
    facts about Lyme disease
    Failure to treat Lyme promptly can cause damage to the brain, joints and nervous system. This is the most serious stage, Chronic Lyme Disease, or Late Persistent Lyme Disease
  • Difficulty thinking or reasoning
  • Difficulty speaking
  • Getting lost in familiar places
  • Anxiety, panic attacks
  • Seizures
  • Tremor
  • Sensitivity to sound, light and smells
  • Headaches and migraines
  • Mood swings, depression
  • Sleep disorders
  • Migrating joint and muscle pain
  • Vertigo
  • Difficulty hearing
  • Vision difficulties
  • Weight gain or loss
  • “Air hunger”
  • Pain in the chest or ribs
  • “Heart block”
  • Neck pain, stiffness and cracking
  • Night sweats
  • Erectile dysfunction
  • Heart murmur or valve prolapse
  • Light-headedness, dizziness
  • Menstrual irregularity

The Takeaway

Lyme disease is a serious, debilitating disease. And it’s essential to know the facts. I hope this has helped you learn more about Lyme disease so you can protect yourself and your family.

Do you know anyone with Lyme disease? Please share your thoughts and experiences below. I love hearing from you and will reply to your comments as quickly as possible.

Also, for more about Lyme disease you may want to check out:

Finally, the information provided in this article has not been evaluated by the FDA and is not intended to treat, prevent, diagnose or cure any disease or health problem.

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Author Marlena Lewis Writes About Life Struggles And Lyme Disease

Marlena Lewis

Author Marlena Lewis Writes New Book

Marlena Lewis, a small town author from Selma, Alabama, writes about her life struggles and her diagnosis of Lyme Disease in her book entitled, Don’t Give Up,

Marlena was a vibrant and energetic young lady, full of adventure, when she decided to join the military at age 21.

She flourished in her career, and 15 years later she was diagnosed with Lyme disease. Not only did this, as well as other dramatic circumstances, change her life, but she felt as though her dreams were ruined.

Through her faith and trust in God she overcame it all and writes this testimony to share with the world her hope, determination and faith! Her story is truly encouraging and a must read!

Her book is available at the links below:

My Thoughts On Marlena’s Book

Marlena’s book is going to impact so many people for good! Knowing her struggles with Lyme disease, and living with Lyme disease myself, I couldn’t wait to read about her experiences. She was so kind to send me a signed copy of her book.

Marlena is genuine and kind and her story is so moving and powerful.It was a great reminder to me that with God all things are possible!

I truly hope you are able to read it.

The Takeaway

If you’d like to learn more about Lyme disease you may want to check out:

Have you lived through a difficult experience or illness? Please share below in the comment section. I love hearing from you!

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Is Chronic Lyme Disease Real? Part 2

chronic Lyme disease

Chronic Lyme disease is a hot topic in the news lately.

Several celebrities, including Avril Lavigne, Ashley Olsen and Yolanda Foster recently announced they have Lyme.

According to the CDC, over 300,000 people are diagnosed with Lyme each year. And countless others have it, but haven’t been diagnosed yet.

Just The Facts, M’am

chronic Lyme diseaseIf you get Lyme and are treated promptly with an appropriate dosage of doxycycline, your odds of making a recovery may be good.

However, we’re talking about people, including myself, who are not treated promptly and suffer debilitating, long-term effects of the disease.

For me, it took 18 very long months for multiple doctors and specialists to figure out what was wrong with me.

This was despite my insistence that I wanted to be tested for Lyme because I had become severely ill after getting bit by 2 tiny ticks one spring.

I eventually tested positive for Lyme and tularemia on different tests, including antibody and the Western Blot. I was “CDC positive”.

You can read more about the need for better testing here.

The Hippocratic Oath

Before my ordeal I didn’t realize things like this really happened to patients. Isn’t part of the oath physician’s take, the Hippocratic Oath, to “first do no harm”?

So how could so many people be suffering from ongoing Lyme symptoms despite visiting numerous doctors?

According to eyeonannapolis.net:

In 2014, there were 26,000 confirmed cases of Lyme Disease in the US, with an additional 6,000 cases that are probable but unconfirmed. The CDC estimates that over 300,000 people are diagnosed with Lyme Disease in the US every year. That’s 1.5 times the number of women diagnosed with breast cancer, six times that number of people diagnosed with HIV/AIDS, and more than nine times the number of people facing Zika virus.

Lyme Lessons

I certainly don’t have all the answers, but I’m learning much through this journey.

I believe God brings good out of bad situations because I’ve seen it.

One of the most helpful things I’ve learned is how to advocate for my health, and the health of others.

People who are suffering with a debilitating illness need kindness and compassion. If you’ve been there you know what I’m talking about.

However, hundreds of thousands of Americans are diagnosed with Lyme each year. The painful truth is that way too many of these people are diagnosed months or years later, giving the Lyme bacteria, borreliosis burgdorferi, time to wreak havoc on a body.

This is often called “chronic Lyme”.

The CDC refers to lingering Lyme symptoms as “post-treatment Lyme disease syndrome”, or PTLDS.

But, it really doesn’t matter (to me) what you call it. I’m not saying it’s not important, but just that we need to focus more on the people who are suffering.

The fact is that debilitating pain and the myriad of other Lyme symptoms are all too real.

If a patient is suffering physically they deserve proper medical care that’s covered by insurance.

“Is Chronic Lyme Disease Real Or Not?”

That is the million dollar question. And while the debate rages on I want to encourage us to keep our focus on the hundreds of thousands of people who are suffering. 

Because at the end of the day, what or who really matters more than people?

chronic Lyme disease
People matter most.

Additional Info About Lyme

Please feel free to check out my story:

If you didn’t read part 1 in this series, you may want to read it here:

Is Chronic Lyme Disease Real? Part 1

And if you’d like to learn more about Lyme you may want to check out:

Do you or someone you love have Lyme disease?

Please share your comments and questions below. I love hearing from you!

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