How I Successfully Managed My Lupus So I Could Travel More
It is easy for healthy people to constantly boast about how simple it is to travel the world, as long as you just TRY. As long as you save money. As long as you stop drinking Starbucks. As long as you travel slowly and eat local.
But the truth is, not everyone is in a situation health-wise that permits them to travel. I was at that place before, so I completely understand. Now that my Lupus is being well-managed, I can share about the things I did to help manage (and even improve) my autoimmune disease so that I could be in a better position to travel more. Obviously I don't know the cure and am not a doctor, so these are just my own experiences that I believe greatly contributed to my health's improvement.
1. I actually took my Lupus medication
This sounds so silly but you have no IDEA how many people don't take their medicine. Especially Prednisone. Prednisone is basically a steroid that will make you feel so much pain as a side effect, you often wonder which is worse: the disease or the medication.
When I was 16, I was on 90mg of Prednisone at only 115 pounds (I was 5'8"). The effect of this medicine left me with a huge "moon face", bloating / water retention, and frequent muscle spasms.
"If your face has gradually swollen into a rounded shape, you may have moon facies. Also called moon face, this is usually not serious. But it may make you feel self-conscious." (WebMD)
With huge chipmunk cheeks and a swollen body, it's no surprise why women (90% of Lupus sufferers) often slip into depression (also a side effect) and eventually secretly start skipping their medicine. They think: I might as well just have the disease.
And I thought the same thing.
As a teen, I was so embarrassed about my appearance that there are only about 10 photos of me that exist from that phase. I wanted to hide away and even tried speeding up the process when my doctors tried to wean me off the meds. By not listening to my doctors, I soon had a flare up and realized why those women were always in the hospital.
Them yelling "I'm done with this medication" was a hint that they were no longer taking their meds according to the doctor's recommendation. Therefore, while I was at the doctor's office every three months, they were there every eight weeks (just estimating). Some of them were even having strokes due to the Lupus.
When I started getting serious about my medicine, I saw that my Lupus could be properly managed and that my doctors were trying their best to get me off the steroids as quickly (and safely) as possible. So I guess they're not all evil experimenters after all?
2. I became my own advocate during doctor appointments
For some reason I just did not trust my doctors. It could've been the fact that I rarely ever saw a head doctor - it was always a younger person doing their residency and then leaving.
I now have doctor friends from college and don't feel the same way, but back then all I could think was: why do you keep sending interns to see me!? These "interns" never knew my history and I would have to repeat over and over again when I was diagnosed, what treatments I've had, etc. etc.
I'd think, "Girl. Doesn't the computer and chart in front of you tell you all that information!?"
It was so frustrating. Then on top of me waiting three hours to be seen by an "intern" and the said resident totally not reviewing my chart / file, they want to go take my blood pressure (amidst my anger session) and tell me it's high and that they need to put me on meds to manage it. It was so frustrating.
So I didn't trust doctors. Or residents. (Also my aunt - who had Lupus - died from a biopsy malpractice from the same hospital so there's that.) I had no desire to tell doctors my hope and dreams - let alone talk to them at all.
Fast forward almost a decade and I eventually found new doctors with new insurance (and used Google to find reviews and weed out the bad ones) and doctor visits got a bit easier. I felt comfortable to say:
"My ultimate goal is to get off of this high blood pressure / high cholesterol medication (all due to the Prednisone), can you test me now and if they are both good, work on a plan to help reduce the medication? "
To my surprise, doctors were pretty agreeable about it. It was annoying at first because it felt like if I didn't say something, they would just keep me on and never mention it. But the moment I would say something, they'd look at my blood test result history and say, "Well actually, you've been pretty good so let's give it a try". If you are seeing different doctors every time (like I was with the residents), then this is even more the case because they don't know (and apparently don't have much time to check) every detail about your history.
It was my job to be my own advocate. My job to voice concerns when the doctor said "Do you have any questions?" My job to bring attention to my health and goals so that the doctor and I could be on the same page. My job to speak up (and not in a rude, complaining way). My job to know what medications I was on (and their doses); what my last labs looked like (ask them to give you a copy); and my job to understand that doctors are slammed with patients and can't remember everything. You and your doctor are supposed to be a team rooting for a victory together against your illness.
3. I took note of what did and didn't work for my (sometimes fragile) body
While at home, I started to pay more attention to my Lupus triggers. There were certain things that made me feel crappy. Certain things that made me feel great. There were even certain people that I realized whenever I hung out with them, I took less care of myself.
Taking all of those things into account, I started to note what needed to be avoided and took those (mental) notes with me where ever I went.
In my article on travel tips for people with lupus, I list five of my most effective tricks to staying healthy so I could travel well. These were all essential "tricks" I learned while at home or traveling locally. They are now solutions that I take with me everywhere and I notice a huge difference without it. My favorite tips: airline exercises to avoid clotting, and probiotics!
4. I slowly removed stress triggers
A lot of people say stress causes much of our illness - and I totally believe it. But I think the advice to "stop being stressed out" is sort of crap. Many of the things that stress us out are totally essential to our livelihood (which is probably why it is so stressful) so some of us can't just "let go of it".
Here are some common stress triggers:
- Lack of sleep
I'll admit, I was sometimes what people called "a ticking time bomb". I was shy and quiet (when it came to addressing issues), and would absorb everyone's drama and my own stress until I exploded. That meant sometimes crying hysterically, or yelling, or even saying something really mean that I'd later regret. I've even swung my hand a time or two... or five. But I don't do those things anymore because I've gotten better at managing what I allow my energy to absorb. I don't remember the last time I threw or hit something, or even the last time I really yelled at someone (actually I do remember the last time I yelled and it was really uncomfortable and scary because I hadn't heard myself yell in forever).
To manage these stress triggers, I starting writing more when frustrated (in a journal that I know my big brother won't break into - yes, I still remember that).
I also recently started taking the 90-second rule quite seriously (a great stress relief hack).
Lastly, I started reprogramming the way I react to (or even create) certain triggers. For example, I do have control over how much sleep I get. I just get embarrassed when people question why I am going to bed so early, so I stay late to feel included.
My solution: not giving a crap whether I feel included or not. Or, if you are a social person, making yourself more available during the time you're awake so that you don't feel the need to "catch up" late. A lot of these triggers are created because we feel a sense of duty. When I released myself from feeling responsible for every event, every decision, and every reaction for everyone else, life got a little calmer. I can't control everything. I want to :-) ... but I can't.
My reduction in stress led to the least amount of Lupus activity I'd ever had (according to my blood test results). Maybe it's a coincidence, maybe it's not.
(Am I the only one who sang "Maybe it's Maybelline" after that sentence?)
But I really do think the two are related.
5. I got smart about my travel decisions:
Managing your Lupus (or autoimmune disease) is not only about taking your meds and treating yourself well, it is also about accepting what you can't do (yet).
When I was in chemo, I wasn't traveling internationally. Sorry, just not possible. And when I did travel during my bad flares (yes, of course I TRIED it), it resulted in me damn near dying. All my fault, I know. Seriously, my doctor was so pissed that she almost fired me. I didn't even know they could do that! FIRE!? ME!?
She actually said: if you do this again, I will no longer be your doctor. I will not treat someone who won't do their part (I'm paraphrasing). I literally started crying and saying how I was so overworked I couldn't see the doctor and couldn't get my refills, blah blah blah (all true). But she was right: I either do the work for my own good or get out.
So when I choose destinations for trips, I am realistic about what I can and cannot do. For instance, when I wasn't doing so well health-wise, I chose not to go to countries that required the yellow fever vaccine (it is not recommended for the autoimmune suppressed). Then I got a bit more stable (and eventually much better) and I was approved to get the vaccine and travel to South America.
It's important to understand and respect your limits.
One day at a time. With proper self care, communication, and research, you can travel more and more with Lupus or any other challenging disease / disability.
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Thanks for reading!
I hope my personal experience with Lupus offered some useful advice for you or someone you know who perhaps cannot travel now but wants to down the road.
**Remember, my statements only refer to my experience managing my disease and have not been evaluated nor approved by the food and drug administration.