Lupus and Travel

I recently made a vow with myself to stop sleeping with my Ipad and cell phone on my nightstand. It all started with these scenarios that maybe you are familiar with as well:

  • you wake up to find out (always weeks later) that you responded to multiple texts *while sleeping- not that you will remember sleep-confirming to that birthday party.
  • and/or looked at your messages to fall back asleep and never acknowledge the text message again. Sorry I never responded… 
  • and/or look at your messages and become in a state of panic/anxiety because WHY DID I NEED TO CHECK MY WORK E-MAIL IN THE MIDDLE OF THE NIGHT?

It’s a sickness, an absolute addiction, and sickness that many of us suffer from… or am I alone on this one? Please tell me I’m not alone on this on.

In an effort to end example un,du, and trois above, I have relocated my drug of choice (just to be clear I’m talking about an Ipad and cell phone…) to across the room and I have made sure they are on silent. Best part about it?

  • No more sleep-texting 
  • No more reading/sleep ignoring
  • No more middle of the night technology induced anxiety

and my personal favorite part- waking up to social media alerts. I’m such a sucker for a good message and waking up to a question from a reader, known as a.r., made my whole morning:

I came across your blog when I googled something like “birthright Israel with chronic disease”, so I have to ask, were you able to do everything? Did they let you sit out if you couldn’t?

I have a type of arthritis and I’ve been putting off birthright for a while now. I’m not in remission but I’m pretty stable at the moment, and I’ve traveled quite a bit. but group trips make me nervous – i’m not “out” (no one really knows I have arthritis), and I’m worried about things like the hiking (mostly Masada), and other activities. Like you mentioned in one of your posts, the fatigue hits me too. Did you find them accommodating to you? Were you able to participate in everything?

thanks 🙂

Riddle me this:

HOW IN MY ONE YEAR OF BLOGGING HAVE I NOT MADE A POST ABOUT TRAVELING WITH A CHRONIC ILLNESS?

Answer: I’m really not sure. So, here I am to address A.R. and their question!

Dear A.R.,

Let me start off by thanking you for your thoughtful question and I hope I can help to ease some of your concerns. I’m thrilled to see that you love to travel- life can seem overwhelming when living with a chronic disease. I’m not here to sugarcoat life with a disease either- I started to write a response and I erased an entire paragraph… did I really just say “now I live my life to the fullest.” That’s half true and half untrue. I wish I did not have a disease that can feel debilitating and limiting- no laying out in the sun, no staying up to all hours, if I do too much activity, I might have a flare. blah blah blah. There is no easy way to say it, but let’s be real- that sucks. I remember when travel was a thoughtless process and I took my health for granted. Now I have to travel smart:

  • Do I have my medicine?
  • Am I able to get my medicine if I forget it?
  • Do I have insurance that will cover overseas expenses if necessary?
  • What if I get sick?

I have asked these questions to myself each time I plan for another trip as I’m sure is the reality for many living with an illness. But! I still travel. And! I now appreciate the fact that I am breathing, walking, living, and fortunate enough to experience this amazing world. Know thyself, right? Meaning, I have learned my limits while still appreciating what the world has to offer- especially Israel, a place that I too pushed off for far too long.

Israel is bikram studio level hot- for those of you that don’t speak sweat, I’m talking 105 degrees hot. And the sun is excruciatingly sunny (I couldn’t think of a better description, deal with it), no hyperbole. I would love to think of more similes to further explain the sun to heat ratio but I think you get the picture. And to do some basic math for you: 

Lupus + Sun = ughhhhhhhhh*

http://www.lupus.org/answers/entry/how-lupus-affects-skin

So I packed a ton of sun block. Like two extra bottles worth. And I crossed my fingers and hoped for the best. And on a few occasions when we sat by a pool, I sat in a shaded area. That’s the reality of my disease. We also did more physical activity on extremely limited amounts of sleep every.single.day. BUT I love being active. I can see Israel being a very challenging trip for a person that is inactive. I know it can be difficult for a person living with pain to workout, believe me, I experience lupus as though I have rheumatoid arthritis. There are times making a fist is excruciating and on most days a dull ache in my joints is the norm. I would never suggest pushing yourself past your comfort zone, but I started to run after I found out that I was no longer in remission. I am a firm believer in living to the best of my ability and since I refuse to give up deliciously scrumptious foods, it was time to become active. Better now than never. Now, if you cannot participate in all activities, that’s fine too. There are additional people on the trips to be there for those that cannot do it all- a friend with severe asthma made the decision to meet us at the top of Masada by cable car (they have those!). At the end of the hike to the top we were given the option to take the cable car to the bottom or to hike to the bottom:

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I chose to hike to the bottom. And my legs were shaking, and I felt invincible. But I did it because I knew that I was physically able to- it was my choice. If I had felt sick or fatigued I would have chosen to take the cable car. Having the option made me feel safer as well.

Finally, I remember the feeling of not wanting people to know that I have a chronic illness- are they going to judge me? pity me? be overly cautious with me? pay any attention to me? I didn’t want any of that, particularly those sad, pitying, you have a disease, eyes. Please, not those! That being said, not sharing your illness with others is your choice, but it’s truly important that before you go on any big trip you let the travel organization know. Initially I was furious that they made me receive approval from my rheumatologist- am I a child, Israel? I’ve been dealing with this for ten years. But I get it- Not only is it their liability if something were to happen to you, but even more important is your health, well-being, and safety, and they can’t provide that for you if they don’t know what you may or may not need. 

I want to be loud and clear: My biggest regret in life would be to stop living for a disease that could kill me. Instead I believe in living smart. Emphasis on living. Because, in the words of Socrates-

The unexamined life is not worth living

 

 

ughhhhhhhhh* – fatigue, soreness, swelling, skin rashes

International Girls

With the way I’m freaking out, you would think that I’ve never packed a day in my life. I left this life detail out, but I’m leaving for Israel tomorrow!

For those of you that do not know, there’s a little (amazing, awesome, life changing) program called “birthright.” 

Taglit-Birthright Israel provides the gift of first time, peer group, educational trips to Israel for Jewish young adults ages 18 to 26. Taglit-Birthright Israel operates on a belief that it is every Jewish person’s birthright to visit Israel. To date, over 300,000 young adults from 52 countries have traveled to Israel for the first time on Taglit-Birthright Israel trips. – Mayanot- (click

Well, folks, I will be 27 in a (insert witty simile that means I will be 27 quickly) so I thought it was about time to experience Israel. Hello! This is an experience of a lifetime- a free trip because I’m Jewish- h-e-double hockey sticks-yaaass. Now I leave tomorrow, but, in Talia-fashion… I procrastinated… everything. 

My negligence has left me without an international phone (that’s what happens when you mentally block out any kind of travel) and a buttload *technical terms only, please* to pack. And by buttload, I mean baby mountain *technical terms only.* And some missing clothing options- I have to cover my shoulders for shabbat (for non-jews, look it up, for jews like me, you can look it up too… google.com) 

The reality is, packing is the least of my worries, but I’m sure it’s easier to focus on travel rather than other truths. Truths like:

  • I have lupus. I was honest when they asked about my medical history- as a result I needed doctors approval before leaving. It’s all so obvious, of course I should need doctors approval, but it makes you feel like a pariah. Or a small child not able to make your own decisions. 
  • I have lupus. When I had my first real flare I was traveling abroad in Greece. As a result, I have some real fears associated with international travel and lupus. Sun is a trigger and I’m the kind of traveler that thoroughly enjoys a sunny place. Israel may range from 90-100 each day with a strong sun… oy vey. 
  • It’s Israel- smack-dab in the Middle East, a nation surrounded by other nations that don’t like it that much *technically speaking* I’ve received quite a few “wow, Israel… be safe- don’t leave your group.” My response is usually, “don’t worry, I have my eulogy written out as a draft on my blog if anything happens.” People don’t like that response… but that’s what I’m going to say if you are going to suggest I might die! 
  • I have lupus.

My friends, I’m off- and I’m certain I will see you soon and maybe even post something while I’m abroad. Mom, I promise to wear a lot of sunblock, hats, and stay well hydrated and rested. John, you know I only have the hots for Irish-Italian Catholics, so don’t worry. Friends, I will bring back evil eye bracelets, sea salts, and other exotic things that you could probably find in a mall but it’s so much cooler because I got it from Israel- I know you just want to see me struggle to carry my luggage. 

Shalom! 

The Jeep

John always wanted a Jeep before his days of a beat down, 1999, Honda Civic that could fit nothing more than two people and maybe a few more tiny people. Why a Jeep? I don’t know… It’s a Long Beach thing, we all love them deep down. John and I discussed at great lengths all of the wonderful trips we could take if only we both had bigger cars, but alas, neither of us wanted to pay or part with our beasts. Following Hurricane Sandy, John and I both lost our cars, drowned to their wheels in sewage water. I was furious, my beautiful, young friend had perished at the hands of Sandy, that good for nothing, lousy, not even a real hurricane, storm. John lost his old reliable friend, the Civic, but I knew there was a shred of excitement as he acknowledged that there was no better time to invest in the car of his fantasies, The Jeep.

Fast forward a year and we haven’t gotten too much out of our SUVs. The camping, the off-roading, the 4 wheel driving, all things we wanted to do were rarely taken advantage of, and to be honest, I didn’t think it was fair to the car. I mean, what was it’s purpose if we weren’t using it for what it was made for?! Which brings me to this past week as we decided to embark on a Vermont adventure for a few day getaway with friends. 

We packed her to the gills and prepared the Jeep for windy, (and windy- get it?) AND snowy, backroad, roads. 

The drive was calm, we spoke occasionally, I love when silence loses discomfort and instead becomes familiar. Conversation becomes chosen words of value, or used to sing old favorites from the 90s station. On the drive North I allowed my mind to wander and eventually I drifted off. The car has always lulled me to sleep- a method frequented by my young and tired mother when she had exhausted all other options of easing a colicky infant.

Tal, Tal, when do you want to stop for food?

I woke up disoriented and groggy, but food has a way of making me alert real fast. We pulled off at the next rest stop and were thrilled to see a Chipotle. It was Johns first time so I was excited for his experience- we really, really love food. We bonded over our love for burrito bowls, guac, and chips and salsa, and then hit the road for the final haul. 

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When we arrived in Vermont I was silenced by its beauty, and though I’ve visited the state before I was still awestruck. The cascading mountains, the dense snow, the smell of firewood burning in the fireplaces of nearly every home, and the evergreen trees are nothing like my beach town. It was nice to shakeup the regularity that I am so accustomed to. When we pulled into our home for the next few days I was thrilled to see the chimney smoking.

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That night we stayed in for board games, puzzle making, laughs, and homemade chicken parm. We tucked in early- we had a few days of snowboarding ahead of us.

Working Girl

Not that kind. Gutter head.

If I was quiet all weekend it was only because I was working in Providence, Rhode Island. Swoon. I loved it.
I have an affinity for traveling to new cities. I don’t discriminate either. They each have their own story, culture, and history.

I also love to have my own king sized bed every once in a while. No boyfriend snoring. No fights over my problems with sheet stealing. The temperature is set to my desired warmth. And, most importantly, I love jumping on the bed by myself. It’s weird at first, because I am legitimately jumping around by myself, but then I turn into a child and instantly enjoy it.
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Unfortunately, I did not get to experience the city for what is was, but I would love to go back.
When I did have time, I was able to walk around uphill Brown’s campus and snap some pictures.

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This is a college campus. As a SUNY (state university of New York) girl, I know no such beauty. I guess this is what the big bucks pays for?! That and the fine edumacation these young students are receiving at Brown.

I believe I was mistaken for a college student a few times based on people looking for directions. excuse me, miss, do you know where… I politely let them finish their inquiry, despite knowing I already had no idea where anything was, and then said, no I’m sorry I don’t go here. Also, dear stranger, thank you for calling me “miss” and not the dreaded ma’am.

This trip made me incredulously nostalgic. I have zero desire to be in college again if that’s what you’re thinking I mean. My mid-twenties may just be the best years yet. I have money that I make! Remember those college days, scrapping together $3 to pay for that cab ride downtown, no thank you. But I did deeply miss walking around campus, I missed my girls, I missed the carefree I have no idea where life is taking me, attitude. Even though it was the most unsure I have ever been about myself and my future. That was part if what made it all so exhilarating.

A co-worker and I were recently discussing the wise old saying, youth is wasted on the young. she looked at me as though to insinuate I don’t know all that I have. I do. I love being young, but as I walked on that campus I understood exactly what she was saying. There were those years I took for granted, and sometimes rushed. I wanted to grow up too fast. I can’t rewind. I can’t regain years.

My awareness of my own wasted youth is what makes me cling on to my present and appreciate all of my days and all that’s around me. Also, I will never, I repeat never stop jumping on the hotel bed.