The Chronic Traveler

01/08/2023

Day Four

The Lonely Mountain.
Today, we meet up with my cousin and her family in the Mt. Hood National Forest. We’re so looking forward to some time with them.

The big news is this morning our camper’s pump began malfunctioning, so the owner is working on a solution for us. We should be back up and running tomorrow or the next day, we’re hoping. For now, we’ll be boondocking and making use of the public facilities.

Tomorrow, we’ll head just north of Portland into Washington for a couple days.

The kids have truly been amazing with all the time we’ve spent in the car. Shiloh made some quick friends at the campground last night. Very soon, we’ll get to set down some temporary roots and stay somewhere for more than a night, and we’re all excited for that.

I thrive off of order and systems, and feel so much more at peace after getting ourselves better organized in the camper yesterday. And as a result, I’m hoping to get back on my schedule with taking meds and staying better hydrated.

I won’t have a connection until later tomorrow, so I’ll be posting a photo dump once we get to our next campground. I hope everyone is having a great day!

31/07/2023

Day Three

Utah did not disappoint.
We finally got to our campsite around 10. We hooked up our electric, cranked up the AC, got everyone situated, then crashed.

We started out slow this morning after two early mornings and long travel days (and the interesting events of yesterday).

Today, we’ll go straight through Idaho and make our way into Oregon. We’re staying the night in Baker City, then tomorrow it’s on to Mt. Hood to meet up with my cousin.

We’re really looking forward to the moment we reach a campground we’ll be at for more than a night.

30/07/2023

Day Two

Low Humidity, mountains, national forests, lots of construction delays, and lots of wind.

So far, I’m really enjoying Wyoming. I feel like I can get my lungs full of air here. The barren landscapes are slightly freeing.

We have 8.5 hours of driving today. Our destination is just south of Salt Lake City, where we’ll pick up our camper. We’re all pretty excited.

Elliot wants to see a tornado. Shiloh wants to both go home and pick up our camper. Micah wants it to be cold. Isaac is stuck by himself in the back and can’t wait until we can declutter Bertha and he can look out both windows.

I think my body is adjusting well to the higher elevations and my lungs love the dry climate. It’s shocking how cool 85 feels in the aridness of Wyoming.

We’re definitely getting tired of driving, but I think we’ve finally rounded the corner where these kids enjoy looking at landscapes and playing road-trip bingo for a good chunk of the time, instead of watching movies and being glued to electronics. Shiloh is doing SO much better than expected.

29/07/2023

Today, we said goodbye to our comfortable home in Illinois for a few weeks as we journey to the west (“I have passed the test.”). Usually at this time of year, we are about to make our way eastward to hang with our friends on the beach. This year, we are embarking upon an epic road trip— the likes of which the Marchands have never attempted.

We will be picking up our camper in Salt Lake City. From there, we’ll be traveling to Oregon, whale-watching in Washington, then over to the wonders of Yellowstone. After we drop off our camper, we’ll jaunt over to Colorado, then home.

In all, we’ll be gone for at least three weeks (“If I take one more step, it’ll be the farthest away from home I’ve ever been.”).

We’re hoping this will be the first of many such trips to come (and many more Lord of the Rings quotes to come).

We’re looking for adventure. To try new things. To stay safe (me), while enjoying the great outdoors. To be active and commune with all of creation. To connect with family (our family of six and other relatives). To create core memories and initiate our vehicle— Bertha— into our family road trips.

Check my stories and posts each day as I document our joys, trials, challenges I face while vacationing with a chronic illness, and sights from our amazing and beautiful country. Cheers.

07/04/2023

Read my latest article about caregiving while dealing with chronic illness.

It’s imperative for our own well-being that we find the right balance for our situation. And this can vary by the season, and sometimes by the day!

01/03/2023

It’s Rare Disease Day, and today we celebrate Shiloh and I. We’ve braved so many challenges. Together and apart. Goodness, she has my heart.

22/02/2023

My latest article. Enjoy!

It’s typically overwhelming to live with a chronic condition on a good day. Throw in a Hallmark holiday and you could have a recipe for disaster.

04/02/2023

25/01/2023

I actually, really love my doctor.

I’m not sure I’ve ever been able to say this about doctors. Rarely have I experienced grace and compassion and true concern from doctors. I unfortunately have a good amount of medical trauma.

But my MCAS specialist is truly a gem. For the past year and a half, she has been the biggest source of relief and hope for me and Chris regarding my health. She is always ready to listen, always asks what I think we need to do, and validates my concerns. Today, I got a hug and so much goodness from my appointment, I almost didn’t mind the 7 hours spent in a car.

Here’s the highlights and an update on my health (and why I’ve been so MIA on my travel account):
-my anaphylactic reactions are worsening in severity and frequency. This is concerning, but we have a plan.
-my airways are way more reactive since having Covid last fall, and my asthma has been almost impossible to consistently keep under control. I see my pulmo in March.
-despite all the bad, I’ve been able to eat. Mostly. I had to fast for four days earlier this month to reboot my system after two bad reactions.
-we’re tweaking some meds, and will most likely be adding an immunosuppressant. The type of drug I would take is used to prevent rejection in organ transplant recipients. I’m nervous, but definitely willing to try.
-On recommendation from my MCAS doc, I’ll be chatting with my allergist about getting Benadryl and solumedrol (steroid) injections to do at home, to supplement what I get when I go to the ER. Lately, I often come home “stable”, but still fairly symptomatic, needing a second round of rescue meds. When I don’t get that second round, it takes me even longer to recover from the reactions, putting me at risk of relapse into another episode of anaphylaxis or asthma exacerbation.

So, we have a plan. My health is still mostly a clusterduck, but I’m so thankful for the providers who are in my corner.

23/12/2022

-24F with wind chill, or 86 and sunny?

I know where I’d rather be right now.

Let me know if you’re looking to book your own tropical, all-inclusive vacation. Then we can all live vicariously through you. 😉

27/09/2022

It’s autumn, and I don’t know about y’all, but my asthma is not having it.

I’ve been MIA because my entire family and I had Covid at the end of August and beginning of September. That took over life for a few weeks.

Life is also taking on a different light as my dad, who has Alzheimer’s, is getting closer to the end of his journey.

And I’ve taken on a new role in my chronic health journey: Patient Leader for the Chronic Hives forum at Health Union. If you or someone you know deals with chronic hives, join us over at chronic-hives.com.

I’ll still be here to assist you in all your travel needs, so please reach out if you’re looking to book some time away! I absolutely love my job, so despite the many plates I’m balancing, I’m still ready and able to help.

18/08/2022

Life has been busy and a tad crazy since the beginning of July.

I deal with chronic illnesses, and July turned out to be a bit of a thumbs down for me. Lots of ER visits, one hospitalization, and gobs of prednisone made for an interesting few weeks. The first two weeks of August was family vacation for my crew, and I feel like we’re finally coming out of the post-travel funk. I definitely over-extended myself during vacation and have been paying for it (not to mention an ER trip for anaphylaxis on the second day of traveling). My kids don’t start school for another three weeks, so I’m trying to fit work in where I can. If you’re looking to schedule some travels over the winter, give me a holler! I’d love to help you find what you’re looking for.

02/08/2022

Not the view I was hoping for on our first day of vacation.🥴 Here’s hoping tomorrow will be better and I’ll be sitting on the beach with my crew and our friends!

20/07/2022

Must be nice…

I am ALL FOR empowering others wherever they are at.

This isn’t empowering.
This reeks of ableism,
and toxic positivity,
and white girl privilege.

I mean, good for her in winning her battles. Yay.

My heart aches for everyone with a chronic illness who sees this magazine cover and automatically recognizes their lack of resources,
lack of faith in the medical community,
lack of faith in themselves,
and shame for not doing “enough”.

If that’s you, know you’re not alone in your fight.
Know you don’t have to tie things up with a shiny bow to make your life look better for others.
And know that if you’re despairing, it’s very possible what you’re feeling will change soon. It may not be what you’re hoping for, but it could be something better.

17/07/2022

Heads up if you’re flying this summer!

Summer air travel is a mess, and flight cancellations and delays show no signs of letting up. Find out which airports have the highest numbers of flight disruptions this summer.

15/07/2022

This chart is a pretty accurate representation of the last two weeks. It’s overwhelming and complicated. I’m at the point once again where everything is a trigger and quickly sets off a domino effect into anaphylaxis. I’ll give you an example:

Today I was doing okay, but feeling “off”. I got my Xolair injection since my asthma has been slightly better controlled the last few days. I also drank a serving of my elemental powder. Feeling a bit more off, but with no concerning symptoms, I stepped into my doctor’s office for my hospital follow-up. Someone was wearing perfume, and within two minutes my voice was hoarse, I was wheezing, and couldn’t stop coughing. The nurse manager *almost* wouldn’t allow me to use my portable nebulizer, but thankfully my doc overrode that when he saw and heard me.

My doctors are concerned about this downward spiral I’m in. They’re concerned that I’ve had five anaphylactic episodes in two weeks. I’m kinda concerned. I have no idea what is going on in my body.

I can say that I am grateful for a few things, though.

After all the fighting and advocating for myself last year, I am seeing the fruits of my perseverance. The ER takes me seriously and works rapidly to stabilize me when I show up.

During my most recent hospitalization, the hospitalist PA spent well over an hour in total with me, plus he made two lengthy phone calls to my allergist and hematologist. He was genuinely concerned about my condition, and as a result, I’ve started on birth control to try and even out my hormones (basically, when my hormones dip at the start of my cycle, my mast cells go crazy). My hematologist will be keeping an eye on me since I have a history of pulmonary embolism. Any benefits from this approach, though, won’t be noticeable for a few months.

My P*P is gentle and supportive, and extremely validating of my current plight.

In the meantime, I’ll just be trying to hang on til I see my allergist, MCAS specialist, and the pulmonologist. Trying to survive. With EpiPens at the ready.

08/07/2022

It’s true. I’m a fresh one here, so it took me a minute to figure this out, but it doesn’t cause me to love my job any less. I LOVE busting my butt to find you the best vacation for YOU. I’m 💯 not perfect, and still getting my sea legs, but I’ll do everything in my power and knowledge to make your trip a great one.

01/07/2022

One thing I hear frequently is that traveling is too expensive. First, yes, some aspects of travel seem to cost an arm and a leg. It’s 💯 a privilege that not everyone can afford. Second, budget travel can and has been done.

See these pics? These were taken from a 10-year anniversary trip my husband and I took in 2016. We had bought a house and moved from our old one less than a year before. We were dealing with the demands of raising a family in our early 30’s. Life was hard. But little did we know I was soon to face one of my most difficult stretches of life with hospitalizations, wheelchairs, walkers, central lines, and more than a handful of specialists.

We took the trip. I planned ahead and was flexible about where we were going. I waited until I found an amazing deal and jumped on it.

We stayed for 4 nights at a 3⭐️ all-inclusive resort in the Bahamas, and it was fabulous. It was our first experience with all-inclusives, and for weary parents who are looking for a relaxing (but potentially also exciting!) vacation, I’ll recommend an all-inclusive resort pretty much every time.

My takeaway here: take the trip. Let me help you find a fantastic deal and then you can DO THE THING. It’ll be worth every penny.

15/06/2022

On my most recent trip, our plane did this and I was stumped as to what was going on. Combined with the sleek new plane we were riding in, it was somewhat ethereal. What do you think?

14/06/2022

Which do you prefer?
Salt life or higher elevation?

08/06/2022

Sorry I’ve been quiet, but I’ve been busy relaxing in Miami-ish (we’re just a bit north). It’s been a lovely break from a busy few weeks, and it has been good for my mind and body.

I love visiting new places, because it gives me the opportunity to guide you to a better experience as you travel. Just before leaving for this trip, I booked a Hawaiian vacation for a friend of mine, and I’m so excited to live vicariously through her. At some point I’ll make it to the 50th state. For now, I’m enjoying the almost-tropical waters of the Atlantic. 😉

Much love and safe travels, friends!

01/06/2022

Mood today.

I’m here to keep it real and a supportive space for those of us living life with chronic conditions and/or disability.

But also, memes bring me life when my brain is otherwise foggy and my body is worn out.

How do you cope on your hard days?

30/05/2022

What’s on your bucket list? Let’s get to work on checking things off…

Let’s check that off your bucket list.

24/05/2022

I love to snorkel. I love being in the water, seeing the beauty of nature up close. And I love the feeling of near weightlessness. I can forget for a minute how my body is flawed or compromised by chronic illness. The ocean is my happy place (a distant second is IKEA lol).

Does anyone else find the ocean to be healing? If you haven’t been, what’s on your bucket list? Where would you love to go to experience the ocean?

20/05/2022

Budget. Most of us have a budget we need to stick to make sure we have the basics covered: shelter, food, phone, transportation. So how do we fit travel into our budget? Here’s a few quick tips:

1. Set aside money each week. Maybe skip that specialty latte and get it just once each week instead of twice, then put that money into your travel fund. Drop all your pocket change (if you use cash!) in a special jar. Drop a few subscriptions and put the money you’d spend each month in a special travel savings account.

2. Travel in non-peak seasons
Dreaming of visiting Paris? Consider going in February. Is island-hopping in Hawaii on your bucket list? Try to fit it in your spring schedule. Choosing off season times to travel can save you some serious dough.

3. Bundle!
Booking your flight and hotel (or other parts of your travel) all at once can help you rake in even bigger savings. As a travel agent, I have access to some fabulous package deals offered by airlines, resorts, cruise lines, and other travel companies. Starting today, check my stories for current travel deals!

4. Be flexible
If you have the ability to be flexible in your dates of travel, or your destination, you can often find some really good deals. I love scouring search results for the best deal, which is part of why I became a travel agent. Let me do that work for you!

This list is by no means exhaustive.
Do you have any budgeting tips you’ve learned through the years? Drop them in the comments.

Safe travel and much love!

17/05/2022

What makes me knowledgeable about traveling with chronic illness? A few things.

My first profession was physical therapy, and I worked in both hospital and outpatient settings for almost 15 years. In 2016, I woke up unable to walk properly, and eventually was found to have a severe case of acute Lyme Disease. I required assistive devices like a walker, cane, wheelchair, and shower chair. During this time, I also dealt with a pulmonary embolism (a blood clot in my lung) and was on IV antibiotics for a year. As you can see in my photos, I also unexpectedly became pregnant while going through treatment for Lyme Disease, and our daughter was diagnosed in utero with a rare type of tumor. She had major surgery on her first day of life, and more surgeries since. She also has required assistive devices like orthoses and a walker.

Last year, I had a major uptick in some distressing symptoms that resulted in a three-week hospitalization (a first of many that year) and reliance on IV nutrition (TPN) for a good portion of 2021. The first photo is me hiking in the Smokies with my family, while relying on TPN for all of my nutrition. The band on my arm is covering my PICC line (central IV access for medication, fluids, and TPN). Thankfully, I am able to eat again, but my condition (which isn’t always apparent on the outside) makes life a challenge to navigate at times. But I continue to fight for a somewhat normal life.

I’ve learned a few important lessons through the years in finding accommodations and access to services while maintaining my own safety and comfort. I hope to pass along my knowledge so we can coordinate an enjoyable experience as you travel. Your comfort and safety while traveling with a chronic condition or disability is my priority!! And yes, traveling with chronic illness and disability is 💯 doable! Let’s work together to make travel a reality for you. Much love.

16/05/2022

Fatigue.
Travel fatigue is common even amongst the healthy and abled, and without a doubt is a huge barrier for those with chronic illness and disability. Here’s a quick list I've compiled to hopefully lessen its effects.

1. Choose non-stop flights
Budget and departure from a small airport are two reasons why people end up with layovers. I have a secret, though: I have access to a greater (and cheaper!) selection of non-stop flights! If you live fairly close to a large city, non-stop flights can be done even on a tight budget.

2. Use devices to reduce strain and fatigue
I use either a f***y (bum) pack or a crossbody bag with lots of pockets and easy-to-grip zippers. Wearing a bag that is snug and compact reduces strain on my body. For international travel, use a passport wallet to easily locate your passport while going through security and customs. If allowed a carry-on, I recommend using a spinner suitcase instead of a shoulder bag. A few more items to help reduce fatigue: compression socks, stretchy clothing, water (w/ electrolytes!), healthy snacks (pack some in your carry-on), and portable devices/tools that help you relax (anxiety can accelerate fatigue).

3. Organize yourself ahead of time
Brain fog and fatigue can make organizing for a trip completely overwhelming. Ask someone for help, or give yourself extra time before your trip, and make a list. Pack your necessary small items in your f***y pack or crossbody bag. If you are allowed a carry-on, put your larger necessary items in there. Here's what I put in my crossbody bag: passport wallet (also where I keep my money), chapstick, eye drops, portable nebulizer, EpiPens, gum, sunglasses, and phone.

4. Use assistance
Use a transport at the airport or when boarding your cruise. When we plan and book your trip, we have the option to select assistance directly with your airline. Do not worry about being an inconvenience! This is a service provided to you at no cost. The same goes for service dogs (though not companion or emotional support animals).

If you have other tools or devices that help you reduce fatigue, let me know in the comments!

Safe travels and much love!

14/05/2022

Barriers to Traveling, and Tips to Overcome Them (A Series)

As someone who is immunocompromised and has strong (sometimes anaphylactic) reactions to perfume, smoke, and fumes of various kinds, how do I travel?

1. Masks
In this pandemic age we thankfully have a wider understanding of mask usage, and it’s not unusual to see others masking, especially while traveling. On a daily basis, I use an N95 mask in public places where I can maintain a distance. While traveling in tight quarters (or when I know I’ll be passing that duty-free perfume store), I strap on an R95 mask. It filters out odors to a certain degree, and saved me from a severe asthma attack while sitting in O’Hare Airport last month.

2. Hyper-vigilance
Chances are, if you’re immunocompromised, you already do this. In case you don’t, stay alert to those around you. If you’re seated on a plane close to someone who is coughing or visibly ill, you have every right to (kindly) ask if you could move to a different seat. If you’re able to briefly explain you’re immunocompromised, and concerned about being near a visibly ill neighbor, most flight attendants will try their best to accommodate you. They may not be able, especially if the flight is full, but they will be more likely if you are kind about it. Which brings me to my third point…

3. Make use of accommodations
When you are disabled or traveling with a chronic illness (be it visible or invisible), make use of the accommodations that apply to you. Assistance to your gate (people are more prone to keep a safe distance when they see you receiving assistance), early boarding, and once you’ve arrived at your destination, distanced seating in restaurants or dining areas (which in some places is changing as Covid is less of a risk).

4. Wash, sanitize, touch surfaces less often
Wash your hands when you’re able, use hand sanitizer after touching shared surfaces when you can’t wash, and avoid touching shared surfaces when possible. Use a paper towel to open the public bathroom door if there is one. Sanitize after finding a seat at your gate. And use the back or your hand or a fist when pressing on automatic door openers.

Safe travels and much love!