I’ve dealt with a top 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.
Not even sure what year I took this. Probably 2014? And it turned out completely different than I had envisioned in my head. Sometimes I start editing and it just takes a different turn as I go along. •
My laptop is currently getting repaired. I can still work on my boyfriend’s desktop but most of my photography is on my laptop so I haven’t been able to get my photography Instagram going.
On an unrelated note, I am so absolutely exhausted tonight. I’ve been taking care of my niece (normally my mother and I do but my mother has very recently had surgery and just got out of the hospital) and I just don’t have the energy to be going nonstop all day. Parents with chronic illnesses I feel for you! Especially single parents. I’m about to pass out.
Change is good? 💇🏽♀️ ✂️ ✂️
I’m starting to like my new haircut.. although, I still think it would look better with more layers. I might get highlights. This was taken the same day I got it cut and it looks super dry and weighed down. I had to mess with it a lot. .
Part of me wants to call and ask them to add layers.. but this is kind of a person with social anxiety’s worst nightmare. (Or one of many) The thing is I’d be anxious doing this at any salon... but this particular salon made me really uncomfortable. .
First off, I bought a groupon because I’m all about saving money. And I don’t think they liked that. It was supposed to include a deep conditioning treatment... and I never got it. (I didn’t even realize until I got home) I also got charged more for them to cut my hair curly (something called a devacut) and then she gave me a blunt cut with almost zero layers. It would have looked the exact same if I had it cut straight. I just don’t think she was used to or knew how to cut curly hair. Honestly, don’t offer a Groupon if you’re going to look down on the customers who use them or not offer them the full service. .
This salon was also in a really rich town and the people are kind of known for being snobby here. Every single stylist was white, with blonde hair and highlights and all dressed the same in tank tops, shorts and mini skirts. (It was 50 degrees) which.. hey, do you... but honestly, I just like places and feel more comfortable with places that have a bit more diversity than this. I don’t want to be the only person of color, or the only person with curly hair or the only person who used a Groupon because I don’t live in this rich town and certainly don’t have a lot of money. I grew up poor and being around classist, capitalist, image conscious people like that makes me super uncomfortable.. and annoyed.
Not my hair anymore. ✌🏼 •
I’ve been in a super stressed and anxious mood lately. But going to the beach today put me in a great mood. Something about fresh, cool air, the ocean breeze and waves... it’s like therapy.
I’m now in a very “self-care” mode. I did an oil treatment for my hair and a deep conditioning. Have a honey mask on my face right now and I bought multiple vitamins, including a multi vitamin and have taken them all. These are all things I haven’t done in years. (Other than taking a multi vitamin here and there) Now I need to change what I put into my body.
I’m going to be posting lots of old pictures ‘cause I have so many that I haven’t even gone through yet.
I’ve actually been taking more rest days in between my practice now. I’m extremely guilty of overstretching. When I set a goal for myself, I want to achieve it as fast as possible and I’ll do whatever I can to do so. In terms of flexibility, that meant stretching for 2+ hours a day, everyday when I first started and that was after not doing ANY type of stretching or yoga in... all my life. All that lead to was extreme soreness and my body tightening up, I actually regressed because of this. Your body needs time to adjust. It needs time to heal. It needs time to recuperate. It’s very difficult for me to get out of the “go, go, go.. push as hard as you can” mindset but I’m learning that this mindset is absolutely not conducive to yoga and flexibility training.
The Hunted (2016) ———————————————————————
People have interpreted this photo two ways. The first, a comparison to a hunted animal and the fear and sadness in a creature’s eyes, knowing what’s to come. The second, a critique of how critical one can be with oneself. A feeling of extreme vulnerability... feeling like the deer, always the hunted and never the hunter..
“You not only are hunted by others, you unknowingly hunt yourself.”
My hair matched pretty perfectly for this shoot. It wasn’t snowing, this was taken in early spring but I wanted a cold, barren feel for this photograph.
This is how some photo shoots go. My stomach starts killing and I instinctively grab my stomach. My camera catches it every time. In fact, probably half of my photoshoots I’ve done I can find a picture like this. Maybe I’ll post them all together. •
Thank you to all of you who messaged me with advice from my story. I appreciate it greatly.
Working on letting go of anything I can’t control. -
I got everything resolved with my insurance, doctors and pharmacy and just got my Humira yesterday. Which is a week after I was due to take it, so thankfully the sweetest person on here messaged me to let me know she had extras and I could have them. Honestly, I was expecting to have to wait a lot longer than a week to get everything sorted out so it wasn’t too bad.. but still wouldn’t have wanted to go a week without medication if I didn’t need to.