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.

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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!

Surgery Time! What I’ll Be Reading In Bed

As I’m typing this, it’s less than 24 hours before I go under for some surgery! I’m not too happy about it (who is!) but I do know that I’ll have more time to be online to interact with all of you, more time to do (multiple) face masks, & more time to read!

Summertime is definitely my favorite time to read. There’s something about reading in the evening on your bed in a pajama shorts set (window open) that’s super calming. Books always improve my mood, so I’ll be getting back to some old favorites while I recover, & checking out some new ones! Here’s a short list of some books I’ll be reading. Enjoy! & be sure to tell me what books you enjoy reading (no matter the circumstances).

Anne Frank: The Diary of a Young Girl (edited by Otto H. Frank & Mirjam Pressler)

Of course, this is a classic! I’ve read it several times; once when I was around 10, again around 15, & now I’m 20 & ready to read it once more with a new perspective! I enjoy revisiting books I read as a child. I feel like I can relate more to some things, find deeper meaning in others, & appreciate the overall message & philosophy in a different & new way (I’ve also recently discovered I have quite a bit of Jewish heritage. Maybe this knowlege will make this read even more engrossing).

On The Road – Jack Kerouac

A classic – but a classic never read by me! My boyfriend sent me this book as an anniversary gift last month, & I still haven’t gotten around to reading it. A novel based on the travels of Kerouac & his friends across the United States, it’s filled with jazz, poetry, & drug use – what I consider to be a combination of F. Scott Fitzgerald’s “The Great Gatsby” & Charles Bukowksi’s work in general. It’s been made into a film (2012, produced by Francis Ford Coppola & directed by Water Salles) & remains a favorite of many, a classic to all, & an inspiration to artists such as Bob Dylan, Van Morrison, & Jim Morrison.

Basically – something I should’ve read ages ago, but hadn’t gotten around doing it. Now, I have no excuse. I have my bed, I have the book, & I have hours to “kill.” It’s time!

The Demon-Haunted World: Science As A Candle In The Dark – Carl Sagan

I have never read this book – nor any other books by Carl Sagan. Some people find comfort in religion; I find comfort in science. I know that some people get frightened by the idea that we’re just a miniscule part of the universe; to me…that’s actually really comforting! It reminds me that I’m just a small part of a huge plan. In a way…that kind of makes it a religion, right?

In this particular book, Sagan aims to explain the scientific method to laypeople, and to encourage people to learn critical and skeptical thinking. I’m not much of a scientist (I hated my “Intro to Physics” class & detested my chemistry class) but I enjoy reading scientific theories. I’m also a huge fan of podcasts, & Carl Sagan has been a great topic of discussion on NPR (& podcasts around the world). Sagan isn’t “just” a scientist – he’s also a philosopher, a thinker, an intellectual. The Los Angeles Times called it “A glorious book…From the first page to the last, this book is a manifesto for clear thought.” It was a winner of the Los Angeles Times Book Prize for Science and Technology, & has gotten raving reviews from The Washington Post, The New York Times, The San Francisco Examiner-Chronicle, to name a few. Well…I could use some clear thought in my life. As you can see, I’m truly looking forwards to opening this for the first time.

Musicophilia: Tales of Music & the Brain – Oliver Sacks

I have been a raving fan of this book since I was very young. Oliver Sacks was a British neurologist, naturalist, historian of science (a professor of neurology at NYU School of Medicine), & author. He was raised & educated in Great Britain, but spent most of his professional life in the United States. Although Sacks passed away in 2015 from a cancer that originated in his eye (& resulted in metastases in his liver) his legacy continues. He remains an inspiration for neurologists, authors, & musicians (Sacks was a great fan of classical music & played several instruments himself) around the world. He speaks openly of his struggles with mental illness, grappling with death & dying, yet is never morbid – always light, playful, & attention-grabbing.

Sacks was never married, & declined to share personal details for most of his life. However, he revealed in his 2015 autobiography – the last book he published before his death – that he was gay, & had began a friendship in 2008 with New York Times contributor Bill Hayes that slowly evolved into a relationship. He was with Hayes until his death. Although Sacks’ sexuality is not a focal point of his career, his writing, or his legacy, I think it’s important to note that such a famous, talented, thoughtful scientist, doctor, thinker, & author was a part of the LGBT community – particularly during this month: pride month. I’m excited to revisit this book with more knowlege of Sacks’ personal life, & even more excited to revisit it because this book’s explanation of synesthesia was how I discovered that I myself had synesthesia!

Overall…I have a great emotional connection to this book, & I cannot wait to reread it. Happy Pride, Dr. Sacks. Rest in peace.

The Five Gifts of Illness: A Reconsideration – Jill Sklar 

This is a new read for me. My mama read it first, & just gave it to me today. Although the author has Crohn’s Disease (!!), the book talks about chronic illness in general, & how it affects daily life, relationships, etc. Unlike most books focusing on chronic illness, however, Sklar focuses on the gifts that a chronic illness may bring. These gifts are: relationships, time and being, altruism, emotions, and goals. She talks about how chronic illness can make you more empathetic, give you a fuller heart, interact with a variety of people who have so much love in their hearts, & overall – yes! improve your relationships, friendships, & even your life. I’ve been warned that this is an emotional read. But I’m ready to read something like this…I think it mirrors what I’m trying to get across to people. Chronically ill babies – check this one out!

Middlesex – Jeffrey Eugenides 

A winner of the Pulitzer Prize, Eugenides’ book is primarily a coming-of-age story & a family saga – that focuses on an intersex man who chooses to live their life as multiple genders. His name may be familiar – that’s because he’s the writer of The Virgin Suicides, another critically acclaimed novel that was adapted into a critically acclaimed film, directed by Sofia Coppola.

Is Eugenides intersex? No. In fact, he identifies as a cisgender heterosexual man. I haves some qualms about reading this book because of this – however, it’s gotten wonderful reviews from multiple sources (including LGBT organizations) so I’m going to give it a go. I’m of the opinion that gender can be fluid (it is not always so!) & kind of live my life with that philosophy (regarding my own gender identity).

I’m hoping that this will be an interesting read, something that will be thought-provoking – but also something that won’t erase how intersex/gender fluid people feel about themselves. After all – this man is not intersex, nor is he gender fluid. I’ll be reading this, but I’ll be treading carefully.

Sally Ride: A Photobiography Of America’s Pioneering Woman In Space – Tam O’Shaughnessy

Sally Ride – a household name. American astronaut, astrophysicist, & the first American woman in space. She also remains the youngest American astronaut to have traveled to space (at age 32). Ride  was extraordinarily private about her personal life, marrying fellow NASA astronaut Steve Hawley in 1982 – & divorcing him 5 years later. The American public didn’t have much more information about Ride’s personal life other than that. It was only after her death, in 2012 (Ride died of pancreatic cancer), that Ride’s obituary revealed that her partner of 27 years – & the author of this book – was Tam O’Shaughnessy, a childhood friend, & a a professor emerita of school psychology at San Diego State University. Yup – Sally Ride was a lesbian! & this book is a combination of reminiscences from Ride’s family & friends, a close look at her career, & dozens of photos, including many never-before-published family and personal photos. Another great book that I’m excited to read during Pride Month!

Man’s Search For Meaning: An Introduction to Logotherapy – Viktor E. Frankl

This book has been called one of the most important contributions to psychiatrion since the writing of Freud. Dr. Frankl, a Holocaust survivor, gives an account of his life in Nazi Germany, & his horrifying experiences that led to his discovery of his theory of logotherapy: a theory founded on the belief that human nature is motivated by the search for a life purpose. Frankl went on to develop his ideas into The Third School of Viennese Psychiatry – aka, the school of logotherapy. The American Journal of Psychiatry called it “perhaps the most significant thinking since Frued and adler” & The Los Angeles Times said “if you read but one book this year, Dr. Frankl’s book should be that one.”

I continue to search for positivity, love, & the concept that humanity is good, not evil, & that good will prevail. I hope to find my hopes confirmed in this book, & I’m excited to give it a go.

That’s all I’ve got! For now, at least. For some, it may seem a lot! For others, it might not be enough. I’m a pretty fast reader, & I’m sure I’ll conquer most of these within a week or so – if not, I won’t be making my goals. I hope I’ve given you some ideas of what to read next! Remember – reading isn’t a chore, it’s an honor! & these are all books I’m excited to get moving on. Comment below & tell me some of your latest (summer) reads!

Love,

Sof ❤