Most of my days have been spent doing photography and videography documentation. My boyfriend is currently getting his PhD and one of his focuses/projects is the documentation of this language in a small town in the south of Italy, Grumento Nova. It’s in the mountains and used to be very difficult to get to. Honestly, it’s still pretty tedious which is why tourists don’t come here. Their dialect is going extinct. I came along on this trip to help with the photography. So, this isn’t really a planned vacation, I’m shooting and editing most of the time and he’s working a ton (more than me) as well.
I’ve felt changes in my body and symptoms lately though. My stomach freaked out the first week of traveling, then settled a bit. And now I’ve been getting super nauseous and throwing up a lot. I’m exhausted even though I’ve slept in most days and I’ve had plenty of rest days where he goes out and I stay in... like right now. My body is telling me to slow down and I’m going to listen. I do not want to end up sick here. So today I’m honestly not going to do much at all and will probably spend it lying in bed. Tonight I have to shoot an interview but I don’t think that will be too long..
I posted about it in my stories but I’ll mention it again, something is wrong with my phone and my keyboard isn’t working the majority of the time so I apologize for getting back to messages and comments so late. I’m responding whenever it works and I’m going to replace my phone as soon as I can when I’m back in the states.
This is something that is really frustrating to me. So many people think they can make assumptions about your health based on being with you for minutes to possibly hours in a day. I'm 100% positive that anyone who saw me out on a given day would never guess that I have a chronic illness and that I haven't been in remission for years. Why? For a few reasons.. because I only go out when I'm able. You're only seeing me when I'm not strapped to a bed or toilet... Because I starved myself for hours to a full day previous to said going out.. Because I have a full face of makeup on or a nice outfit most likely.. but also because I try really hard not to show that I'm sick. Contrary to how open I am on this Instagram.. I am not this way in real life. I barely talk to anyone about my symptoms, I downplay my symptoms the majority of the time, and I'm not comfortable talking about all the embarrassing Crohn’s details to very many people, at all. My mom may be the only one really.. but even to her, I don't show how I really feel most days. I've dated my boyfriend two years, and I'm only just recently getting really comfortable enough to share all the realities of my disease. This isn't a fault of his. It's just how I am. I'm a closed off person and I've spent most of my life trying to appear a certain way. Appear tough, independent, like I can handle anything. Of course this leads to people never really knowing how you truly feel. Because if everyone went strictly off of how I look, like I said, no one would know I'm sick. I think I need to work on being more open and vocal about how I'm feeling and asking for help when I really need it instead of trying to power through on my own. But I also wish everyone would realize that an invisibile illness is just that... invisible and how I look is not indicative of how I feel.
The incredibly beautiful Iceland. Went hiking on our first day here completely sleep deprived. I started this hike with multiple layers on.. two pairs of pants, a tank, a sweater, a rain jacket, two pairs of socks and ended it wearing only my tank. That’s how unpredictable the weather is! Luckily it cleared up for me to get this shot. -
Back to our regularly scheduled program, guys. I’m in Grumento Nova and settled for the next 3 weeks. So I’ll be back to posting more regularly. This trip has been amazing but it has also been exhausting and is a lot on my body. My stomach freaked out for the first week and I spent a lot of my mornings and evenings inside.
Not actually in the clouds yet but waiting at the airport for our flight. We have a short, couple hour layover in Spain (will just be in the airport) then to Naples, Potenza and finally Grumento where will be be staying the majority of the time. I’ll be really relieved when we finally get to Grumento and I can just relax and not be so worried about eating. ••
I’m currently really nauseous and not feeling the greatest. I’m going to try to rest on the plane but I doubt it’ll happen. As soon as I get to Naples, I’m going to rest and recuperate. I really have to listen to my body on this trip. I’ll spend the next day exploring Naples when I feel better.
Sooo.. my boyfriend surprised me with a trip to Iceland before we go to Italy! This is the place I’ve always wanted to go most and he knew that..
Today is our two year anniversary and we spent it exploring. I’ve been here two day and I’m already lost for words to describe this scenery..
We were awake going on 35 hours though without sleep and we accidentally slept for almost 15 this morning. 😬 There are 20 hours of daylight here right now so there’s no sun to use as a clock for our bodies. Which I think makes the jet-lag worse. Let’s just say I’m exhausted.. but this has so been worth it. -
We’re going to do some more exploring in the morning and we leave tomorrow night for Italy.
Thank you for taking me on the trip of a lifetime, babe. ❤️
I got this mask for traveling so I don’t get sick. I debated for a long time whether or not to buy this because I knew I wouldn’t be comfortable wearing this in public. It would draw attention to me, and I do not like attention... but it would also greatly reduce my chances of getting sick. My boyfriend convinced me to get it..
The pattern is cute.. it really is. But all I can think is that I look like Bane when I’m wearing this. 😬😆
I have been thin all of my life and it's required almost zero work or maintenance. My diet is shit. Seriously. I do not eat healthy. Right now I don't eat very much because of my symptoms, but I used to just eat whatever I wanted all day, everyday. My weight stayed the same.. hell, I even still had visible abs. This is genetics. This is luck. (I hate to even use the term "luck" because to be lucky to be thin is to regard thinness as the norm or the "should be") But unfortunately, this is the ideal in this fucked up society. One of the standards for beauty is to be thin. And you are afforded certain privileges when you fit or conform to this..
I'd been planning on making this post for a while but after a recent conversation with @balancedandblissfulblog over a post a major influencer made, I decided to finally make it and use it as an opportunity to talk about thinness in regards to the body positivity movement. •
I want the body positivity movement to belong to everyone for the sole reason that I want everyone to love their bodies as much as humanly possible and a movement founded on self love and care is one that I want everyone to experience. BUT.. I also want people to realize that there are privileges afforded to those of us who are skinny and not deny this..
If I were to post my rolls, my bloatedness (which I've done), I would be praised for my braveness and openness. If I were to stuff my face with anything I wanted, I could do so without fear of being shamed. If I were to open any magazine on any shelf, I would find my body type represented. And if I were to flip on the tv or listen to the majority of things people had to say, I would easily be assured that I fit a standard of beauty that is considered the norm. These are privileges, guys. They're luxuries not afforded to everyone..
Now, of course being thin does not equate to feeling good about oneself (trust me, I'm a perfect example of this).
(Cont. in comments)
Meditation outside.. 1000% better than in a house. My apartment is close to a very busy street, the houses are on top of one another and there’s a 50/50 chance that someone will be blasting music or talking ridiculously loudly. Even without all these distractions, I find meditation very difficult for me. In Maine, I did find that the fresh air and zero distractions helped. All I could hear was the birds chirping and the wrinkling of the leaves on the trees.. both of which are white noise.. nice noises and I was able to focus more clearly.. but still not for very long. I think I’ll download an app with nature sounds.
My mind is just always, always racing. It’s really difficult to shut it off.
Took these when I was in Maine. I did a yoga day and took so many pictures because I absolutely adore this house. It’s super secluded, I have complete privacy. I can wear whatever I want and do whatever pose I want without being horribly anxious that anyone is watching me.
Also from someone who has grown up poor, this house is my dream house. I would do yoga outside all day everyday if I had a house like this. This was actually my first time doing actual yoga (flowing) outside. I usually just take a couple pics/poses and I’m done. I stayed outside for 5+ hours because I didn’t want to go inside. It’s so nice doing yoga in fresh air under a blue sky.
I’ve dealt with a ton of crap (literally and figuratively lol) because of this illness and that makes me awesome. 💁🏽♀️ Anyone who is dealing with a chronic illness is awesome even if you don’t feel it most days. (I certainly know I don’t..)
I need advice for traveling with Humira. If anyone has traveled with refrigerated necessary medicine please comment or DM me. Did you get a doctors note? I’ve been told if I call my pharmacy they can provide me with a transportation bag? I was just planning on getting a lunch pack and putting frozen gel packs in it to keep it cold. It needs to stay cold for around 9-10 hours.
You guys, I leave for Italy in less than two weeks. 😬😬 I’m slightly stressing and freaking out. First, just because I’m trying to get everything sorted in time. This is why I haven’t been posting very much. But mainly because I’m really worried about getting sick and how I’m going to manage my eating schedule (I eat very little when I have plans) and how I’m going to have the energy to carry really heavy luggage and what the bathroom situation will be like everywhere I am.. etc. I’m just crossing my fingers I’m fine and everything goes smoothly. I’m very excited though! Despite the nervousness. •
I had my boyfriend take these of me.. or my brother in law. They both took a couple and I don’t know who took which. I remember when my sister and her husband first started dating, I approved of him because he had lots of Canon photography equipment and I knew I’d be able to borrow it.. so I completely encouraged the relationship. 😆
The last picture, there were lots of people walking by and I don’t like being looked at, lol.
My IBD story. I’ve had Crohn’s disease for close to 15 years. I’m curious how long all of you have had IBD? What year where you diagnosed and how old were old?
I’m more curious though, would you give up this illness if you could? I don’t mean that you could wake up tomorrow and suddenly be cured with all other aspects of your life staying the same. I mean if you had never been diagnosed at all, therefore changing many things in your life.
I’ve seen a lot of people answer no to this and go on to list the positives.
I know I’m largely who I am today because of this illness. I wouldn’t have people in my life that I do right now if it weren’t for this illness. But I’d also have a loottt of things that I don’t have now because the illness has taken them from me. And I’m not completely sure of my answer, I’m leaning more towards yes but it’s something to contemplate. Not needing surgery and not having to deal with constant symptoms, medications and procedures seems really hard to pass up.
I honestly don’t know why it’s taken me so long to make this post. I just had zero motivation to write anything, zero motivation to post or edit anything and zero motivation to do much of anything really. Today is world IBD day though, so I’ve forced myself to finish this and finally post the resolution.
I know I can seem negative and self critical but I am actually incredibly proud of myself. And I’m proud of all of you chronic illness warriors. The average person cannot live the way we live. They don’t deal with our struggles and everyday hardships. They don’t deal with the constant pain, the fatigue, the never ending symptoms or the emotional rollercoaster that is having an autoimmune disease and a body that attacks itself.
My last two posts have focused on the difficulties of living with all of this. But I’d like to make a shift here and change perspective to all the good that’s come out of being sick. I spent a lot of time hating my life and hating what this disease took from me and did to my body. I was focused on all the bad, and ignored all the positives.. but I can’t change anything that’s happened in the past nor can I change that I have this disease. What I can do though is try to change my outlook and perspective. (Easier said than done, I know)
I am an incredibly compassionate person because of my illness. I’m kind. I’m empathetic. I genuinely care about people. Because of what I’ve dealt with, I can easily relate to other people dealing with similar issues and I feel for them in a very real way.
I’m not superficial. At least not in the typical definition of the word. But I know what’s important in life, I know what to be grateful for and I think I have my illness to thank for this.
I appreciate my good days. I appreciate life. People take their health for granted and it can be incredibly frustrating to witness.
A chronic illness is a great filter for figuring out who really cares. I lost a lot of friends when I got sick and a lot of people can’t deal with (or simply don’t want to) the ups and more often downs of always being sick. The people who have been there for me have been made very apparent.
(Cont. in comments)
Part 2 of 3:
I really didn’t make this account to motivate or inspire. I’ve never thought of myself as motivational. I’m not the most flexible. I’m not the strongest. I’m certainly not the most positive. I’m quite pessimistic and my real life is an actual mess.
The reasons I did make it:
➊ I needed to keep myself accountable. If I had people following me who checked in on my account, perhaps it would motivate me to practice more often.
➋ I wanted to keep track of my progress and the constant pictures helped show me that I actually was progressing when I otherwise wouldn’t have noticed.
➌ I’m a photographer and I greatly missed creating. While this isn’t the outlet like fine-art/conceptual photography that I love... it’s still photography and it’s nice to pick up my camera again.
➍ Lastly, and mainly, I needed to feel productive. I spent my days feeling as if my life was passing me by... and still do sometimes. I feel as if I’ve accomplished nothing and my days were spent doing nothing. When you’re chronically ill and not working it can feel as if your life has no meaning.
In this capitalistic society, your worth is measured by your productivity and your accomplishments. It seems as if your purpose is directly correlated to what you can contribute. To someone who can’t work, your self worth can take a hard hit. It’s difficult to unlearn and separate yourself from this harmful ideal. And it makes it more difficult when you don’t appear sick. Other people look at you, assume you’re fine and label you as lazy, wanting to “mooch” off the system. (Don’t even get me started on this, but this is a topic for another time) The reality is they don’t have a fucking clue..
I see everyone around me making strides in their careers, having children, buying houses...While my life is at a standstill. It’s very, very difficult not to compare myself to others in this regard.
Especially because I know what I’m capable of and I know what I’ve had to give up. -
(Continued in comments)
My name is Rosalee. I’m 25, turning 26 in July. I have a chronic illness called Crohn’s Disease and was diagnosed at 11. I haven’t been in remission for over two years and my doctors have been pushing for surgery this whole time. The surgery will result in an ostomy. I’m really not in a great mental state right now for this. Perhaps I’ll never be, I don’t know. But it’s going to happen within the next upcoming year. I’m currently just trying to get in shape. Yoga is the gentlest form of exercise for my body and I try to practice everyday but it rarely happens. I either lack the energy due to constant exhaustion, my stomach pain is too painful, or I simply lack the motivation to get up and move. I have social anxiety and it’s pretty severe. I’m not on medication for it. I had to cut most of my hair off due to it falling out excessively from chemotherapy and biologic drugs. Still getting used to it.. •
My journey is one full of struggles, hurdles, setbacks and constant challenges. But I try my hardest to persevere. I get frustrated easily. I get angry at myself for not practicing as often as I say I will or not progressing as quickly as I’d like. My progress is slow.. I made this Instagram a year ago and my flexibility hasn’t improved anywhere close to other yogis I follow. But I try not to compare myself to others. Our situations are not the same, our struggles aren’t the same and our journeys are not the same. I’m proud of my progress. I will get flexible and I will get strong even if it’s at a glacial pace..
Thank you to everyone new and old who has supported me, encouraged me, lifted me, motivated me and followed me along on this journey. It’s greatly, greatly appreciated. 💜
I’ll be posting part 2 of this caption tomorrow.
Do whatever you need to do for both your physical and mental health. This includes whatever self care activities that will help, cutting out toxic people and even being “selfish.” I know I’m always concerned about being selfish and I think a lot of us have this mindset when we’re taking care of ourselves, telling others “no”, setting up boundaries and sharing our very real limitations due to illness. But taking care of yourself is not selfish. Your health should always come first. Do what you need to do.
I’m looking to incoperate smoothies in my diet more and I’m trying to find some that I like.. or can at least tolerate. I think it’ll be easier for me to down something liquid than chew something I don’t love. •
So, anyone who makes smoothies often which is your favorite or most tolerable? I’ve tried a couple but I don’t find any of them that great. I am an extremely, extremely picky eater. And I feel as if I’m being lied to when I’m looking up smoothie recipes! Especially green smoothies recipes claiming to be delicious... I’ve tried multiple and was gagging the first sip. So if you’re an extreme picky eater, I would love your input!
📷 Cred: @grubzon
I’m really not loving this rainy, cold weather.. but the forecast over the next few days looks much better.
I went into Boston today with my boyfriend. We ended up driving to Cambridge and then taking the Commuter rail. But I didn’t plan for this and didn’t think there would be so much walking. I’m now lying in bed resting and it just has me thinking about how this disease has taken so much spontaneity out of my life. I can’t do anything without planning and preparation. In order to have been fully okay to be walking around the city for hours, I should have not eaten the day before... This is what I do anytime I have something planned that I really want to do. I starve myself beforehand. Of course, this means I have little to no energy but at least I won’t have horrible stomach pain or need to be on a constant lookout for a bathroom. We ended up going out to eat, and after I ate it hurt to stand upright and I had trouble making it all the way back to the car. My stomach is okay now after resting but I’m still thoroughly exhausted. I just can’t stand how scheduled my life needs to be. I know this is something the surgery will give back to me.