Diary: I AM VERY SICK! & Now That I Have Your Attention – Please Read This! (No, It’s Not Clickbait)

Hello friends! This is just a short diary post & a quick life update.

I am still working! Still working hard at a “real” job. It is very hard; I’ve had some issues with fatigue & treating my hands properly. Since I am now arthritic, it doesn’t take much to get me into an arthritic flare. Usually, I am triggered by cold temperatures. Right now, my circulation in my hands is very bad because of the flare – the inflammation cuts circulation off to my fingers, so they look white or blue much of the time.

Why am I telling you this? For pity? Clickbait? No, definitely not. I’m trying to speak candidly about my illness(es) & raise awareness for them.

I just put out a few resources last night: here’s my YouTube video, titled “My Illness Is Not Your Inspiration!!!” Here’s a short introductory clip – click here to watch all of it. I really hope you do. Disabled or abled, young or old, I hope all of you can either learn something or feel like you can relate to what I am saying (here is a link to the full thing).

Have you heard of Hospital Glam? If not, you should check them out here (on Tumblr)

What is #HospitalGlam? According to the Tumblr:

“#HospitalGlam is a movement for and by people with invisible disabilities that started by appropriating fashion imagery and reinserting it into medical environments using bodies that don’t outwardly present as sick or disabled. #HospitalGlam is about contextualizing ourselves inside an often alienating environment in order to assert our rights as patients & better our treatments. By taking #HospitalGlam photos and posting them on social media, patients increase awareness in their communities and with doctors.”

I cannot emphasize how much#HospitalGlam has given me confidence even when I felt like I had none. It allows you to pretend to be confident. By pretending, you become more confident. This is something I truly believe. Here is something I wrote a while back, pertaining to #HospitalGlam:

“i have crohn’s disease & inflammatory arthritis. these illnesses have crushed some dreams & have ruined many a date/outing/even a vacation. i am not proud of my illness, but i am proud of how i have come to deal with it. every day is a learning process. i still cry many tears over it – i still get angry about the cards i was dealt. but if someone had told me two years ago that i would have shaved my head, dressed up in high-heeled boots & fancy sunglasses to go to a doctor’s appointment – then POSED in front of a chart of the digestive tract…i would have laughed in your face. this seems to be a common thing. the old me would have laughed at the thought of me even daring to do such a thing.

i am proud of the progress i have made – if not physically, then mentally. these are issues that will affect my personal life, my careers, my schooling, my relationships…for the rest of my life. i get joy & confidence for a moment when i make a “glam” pose in front of something that is so funny! no! crohn’s is not a “bathroom disease” – it is a serious, sometimes life-threatening one. some things are getting better, others are not. but my mind is healing, & every day, i learn more about myself, my illness, & how to deal with it. i am grateful for the friends & connections i have made. i am grateful to have a family that supports me. i am grateful to have gotten out of a situation with a manipulative doctor. i am heartbroken over a diagnosis i got over two years ago, but i am still grateful for what i have today. it has shaped me as a person. like it or not, i will give my disease that. for better or for worse, i have learned to be as unapologetic about myself & my illness as possible. & i love myself for it. thank you for creating a platform that inspired me to flaunt my beauty – because beauty is present…even in chronically ill or disabled people! how about that. much love.”

I hope you check out #HospitalGlam’s Tumblr! They are an amazing resouce for people with invisible illnesses. I also encourage abled peopel to take a peek. We can’t continue to raise awareness without abled people listening, learning, & sharing our experiences.

FullSizeRender.jpg-48

Much love to all of you! I’m continuing to learn & I hope you are, too. Stay tuned for some posts containing my own writing – mostly pertaining to chronic illness, but also on other topics! Remember: I’m more than my illness & all that, yeah?

Also: check out the hashtag #DisabledAndCute on Twitter – it is filled with lovely photographs of chronically ill/disabled people showing off their beauty – whether in a hospital or out. It’s a great movement, & one I always talk about when I can.

 

I am trying to remain positive despite everything. September will be a hard month. I should be at school, but I am not. That sucks – but I’m making a great effort to make connections with people, meet new people, love new friends/people – & old. I know that I will come out of this a better person.

Have a lovely Friday (& stay tuned for Fenty Beauty reviews when my products arrive).

Love,

Sof ❤

P.S. Don’t call me strong 🙂 or inspirational 😉

P.P.S. I am trying to make more YouTube videos, but have no earthly idea of what topics I should cover. Suggestions appreciated!

Diary: My August Was Different This Year, & My September Will Be, Too

August – the month of preparation, excitement, adrenaline! High school students don’t like it; college students are elated to get back to their home away from home.

I never liked high school & always kept myself busy with my violin, focusing on the fact that once I made i through high schoool, I’d be in school doing something I truly loved. My first two years of university were not easy, but I did them – despite being sick, being hospitalized, & dealing with some other personal issues not related to illness. Even though I’d often collapse at the end of the day, it was worth it – I loved every minute.

I’m writing this 2 days before the beginning of September. If I were “normal,” I’d be preparing my things, moving into my place, & getting ready for my courses. This semester, that’s not happening. I’ll be at home, trying to get stronger so that I can come back full-force in January.

I’m not going to lie; it’s been really hard. It’s been hard seeing people I know & love go to university for the very first time. I remember how excited I was, all the good times I had, how hard I worked – & I get sad & angry, because it’s not fair that I’m in this situation.

Seeing people get so excited about school also motivates me. It reminds me that university is the happy part of my education. Sure, I no longer can do what I was expecting to do – but there are infinite possibilities. I can take some of the time I have this fall to narrow some of those possibilities down.

Here’s some love for all the people who have been pushed down this fall – the chronically ill people who can’t make it back to school. I am sorry you’re having to deal with this. It’s unfair to have your plans foiled by your own body.

I’m taking this opportunity to, yes, be sad…but I’m also trying to write more, listen to more music, go for longer walks. I’m taking an online class, & I’ll be keeping up my reading, too.

I’m allowed to be sad about this, because it sucks! I also have to remind myself that it is important I look ahead, too. If I don’t, I’ll just get stuck in a funk. Those are no fun to be in – even less fun than not being able to go to school.

I’m still a music-lover, I am still creative, I still love writing, reading, & I love the school I chose. This is just reboot time. It’s not okay, but it also is – & if I focus on the not okay parts of this, I’ll never feel positive about the situation.

So – love to all of you going away for the first time! You will have a tremendous time, filled with new people & new adventures. Love to all of you returning! I am sure you cannot wait to get back at it.

&, most of all, love to those who desperately want to go back this term, but simply cannot. You are taking care of your health, & it is not an easy thing to do. I love & appreciate you all, & I understand that it’s not ideal. But this reboot might save you – & me! – some serious pain & even hospitalizations down the road.

It’s going to be okay, even when the situation is not.

I love you all! Happy back to school.

Love,

Sof ❤