You Gotta Keep Your Head Up (Oh Oh)

Chronic Illness, Uncategorized

How I Stay Positive Chronically Cute Blog

Hey cuties!

No, you didn’t read that title wrong– that was an Andy Grammar reference. I wanted to write this post because I went to the dentist today (gross) and my hygienist (who is a saint) complimented my positivity in the face of all the things I’m dealing with. Fibromyalgia, IBS, and the shit storm of dental problems caused by low enamel, TMJ, and a lack of calcium in my saliva (who knew, right?).

But Here’s The Thing… I’m Not That Positive

This morning even I was quiet and withdrawn, dreading going to the dentist again (I went last week for a more emergent fix and they were like, oh, hey, you also have all the cavities despite your excellent dental hygiene). 2018 was the year of doctors for me, and since coming home for my winter break I’ve made the rounds to all my doctors here at home. Add in an ER visit, lots of not-so-encouraging news, and a few nights in the last week sleeping on the couch because of painsomnia, it’s not surprising I’m feeling worn down and a little discouraged. I’m tired of living my life in these conditions.

But that’s just the thing– I’m not tired of living my life period, because with all the bad there’s a shit ton of good. My cat, for example, is the light of my life (despite her tendency to seek out trouble). I also have writing, and blogging, and music, and, though it’s a source of stress, I have my college classes.

I’m struggling right now to accept how much pain and suckiness I’m having to deal with, and it’s getting me down. If I’m being honest, I’m about as far from positive as I can be right now.

So why did my dental hygienist think I seemed positive?

Maybe it was because even though getting my teeth cleaned hurt due to my genetically un-blessed teeth, I was polite and patient because that’s how my parents raised me. Maybe it’s because I tend to downplay my struggle. Or maybe it’s because I keep the frustration at an arm’s length. I do my best to feel it, acknowledge it, then let it go.

I do this by venting to friends, or journaling, or by singing some really angry songs in the car or shower. Sometimes I meditate, or try my best to draw even though I’m about as gifted artistically as a llama wearing a blindfold. As important as I think it is to feel these emotions, I think it’s equally important to let them go when I can. Harboring negative emotions takes up space for the positive ones.

Easier said than done– believe me, I know. I’ve broken down crying a few nights this week from the sheer overwhelming dread of waking up the next day in just as much pain as I was in today. But after crying, and journaling, and petting my cat for a little too long, I go to sleep feeling better. It also helps to think about the good things I get to do the next day: play feather with Abby, write a blog post, record a podcast, play piano.

How do you stay positive?

If you have any sage wisdom or tricks to staying positive, please let me know in the comments! And don’t forget to check out my new podcast, The Chronically Cute Podcast, currently available (as of January 8th, 2018) on Anchor here and on Stitcher here 🙂 Coming soon to other podcast platforms!

The Chronically Cute Podcast Launch!

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new podcastjust launched!.png

Hey there, cuties, and Happy New Year!

In this new year, I’m launching The Chronically Cute Podcast, which has gone up TODAY! The first launch is today is currently available here through Anchor, but in the next coming days will be available on most podcast platforms. I’ll update this post at the bottom when it’s more widely available 🙂

I’m starting this podcast for much the same reason I started this blog: to create a space for us spoonies to talk and discuss our chronic illnesses, share advice and hacks, and help spread awareness.

New episodes will be posted every week on Sunday, and there will always be an accompanying blog post sharing a summary of the episode, links to where to listen, as well as any resources from any research I’ve done for the episode.

But Wait, There’s More!

In order to make this podcast what I want it to be, I need your help!

Is there something you want to hear me talk about? Is there a hack or product you know about that makes your life easier that you want to share with me? Do you want to share with me your experience with chronic illness? Please feel free to email me at chronicallycuteblog@gmail.com!

Please let me know if you want your input to be anonymous or credited. If you’d like, you can include a voice memo of yourself if you have a short question or a short anecdote or piece of advice!

And Lastly, I Need Your Input

I want this to be a podcast with community input, and in order to get that input I’ve been thinking about sending out an email blast or newsletter with my upcoming topics asking for input. Would you be interested in getting this email so you can contribute if you want to?

Here’s hoping you’ll give it a listen!

If you like it, please subscribe to it, share it with your friends, and leave a review! It’ll help me to reach more people and build our community 🙂

UPDATES:

1/8: Now available on Stitcher here

1/10: Now available on Google Podcasts here, Spotify here, Breaker here, Pocket Casts here, and RadioPublic here.

5 Podcasts That I Love (That Have Nothing to Do With Fashion or Chronic Illness)

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Hey there cuties!

On a day to day basis, I’m dealing with a lot of Uber rides to doctors’ offices, walking to run errands, and chores that are physically painful for me. Something I find makes all of these things suck a little bit less is listening to podcasts (or audiobooks) to make the time pass faster. Not only are they entertaining, they’re often informative and the information I learn can make for excellent conversation starters.

Today, I’m sharing my current top 5 of podcasts (that have nothing to do with fashion or chronic illness).

My Favorite Murder

This is tied for my favorite podcast with the next title, but I will say that this podcast is not for everyone. There’s a lot of swearing, a lot of gruesome details, and a lot of really sensitive material. However, the hosts Karen Kilgariff and Georgia Hardstark are hilarious and thoughtful and bring awareness not only to the stories of victims of murder, but also bring awareness to mental illness and other important issues. I know the idea of a comedy podcast about murder sounds a little out there, but they do a really good job balancing their immense respect for the victims and the comedy aspect. I’m actually going to see them live in the fall, that’s how much I love this podcast.

Oh No, Ross and Carrie

Again, this podcast isn’t for everyone. There is swearing, though less than MFM, however the content is controversial. The hosts, Carrie Poppy and Ross Blocher investigate cults, religions, the paranormal, and pseudoscience. They’re also hilarious and endearing and so easy to listen to because their rapport is so strong.

Dear Franklin Jones

This podcast was a series about the cult leader Franklin Jones. It was an investigation run by Jonathan Hirsch, a survivor of the cult. This personal connection makes the story more intense and touching. Again, this story contains really mature and sensitive content, so listener beware, but I will say that if you have any interest in cults you will really enjoy this podcast. It’s also not too overwhelming if you’re just starting to listen because there is a set number of episodes (unlike the over 100 episodes of My Favorite Murder and multi-year backlog of episodes of Oh No, Ross and Carrie).

The Clutterbug Podcast

This podcast is run by the lovely Cassandra Aarssen, who runs a youtube channel with the same name as the podcast. She’s a professional organizer– but before you think she’s got her life together and is preaching from her high horse, she admits she used to be a “cluttered mess” (that’s in quotes because she actually wrote a fantastic book called Cluttered Mess to Organized Success) which means she understands people who suck at organizing (like me) and gives advice that is really easy to follow for us who aren’t as naturally neat. She’s so likeable and energetic and relatable and she’s a real person. She talks about her struggles as well as her successes and I can’t say how much I respect and appreciate that honesty.

Stuff You Should Know

This is the OG podcast. If you like podcasts and haven’t heard of SYSK, you must have studiously avoided it. This podcast talks about anything and everything and is well-researched and well-presented. It’s factual but entertaining. It’s lighthearted, easy to listen to, and there are so many episodes you can choose the topics you’re interested in, especially when you’re just getting started.

I’m always looking for recommendations, so if you have any podcast recommendations please let me know in the comments. And if you want a post on my favorite audiobooks, let me know that too!

Athletic Style

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Hey cuties!

I’ve never really been one to keep up with trends, but every once in a while something becomes quote-unquote “fashionable” and I jump on board.

Today, that trend is athletic wear for everyday fashion.

Maybe it’s because it means getting to be more comfy, maybe it’s because it means I get to wear things I like that I normally wouldn’t.

Options

  • Sneakers: These are having their own moment this season, which is totally fine by me! My favorite shoes, Clarks Cloudsteppers, look like sneakers (at least, the ones I have)– review coming next month of these shoes!
  • Branded Activewear: This isn’t my kind of thing but this is a really easy way to get in on this trend. If you (unlike me) have an Adidas shirt hanging in the back of your closet, you’re well on your way.
  • Workout Wear Mixed with Regular Clothes: If sneakers is my absolute easiest way in, this is the second easiest. Basically, you change something that you’re already planning to wear with something more athletic.

Piece of Focus

I saw this windbreaker on Forever 21 and I fell in love. It’s not the kind of thing I usually wear, but I went for it hoping I could make it work. And I like to think I did! So I’m styling this today; for an option with more inclusive sizes, you can find something similar here.

athletic (1 of 2)

Outfit One: Full Trend

For this outfit, I’m wearing a grey crop top from Primark (similar here), a pair of American Eagle jean shorts, my windbreaker, and a pair of Nike sneakers. I purposefully wore my hair in a ponytail to look more “sporty” to go with the look.

Also, my hair was dirty.

Also: my cat’s the cutest ever, isn’t she.

Outfit Two: A Little More Everyday

athletic (2 of 2)

To make the windbreaker a little less sporty, I paired it with a polka dot dress from Old Navy. I wore it with my Forever 21 wedge sneakers, which I usually wouldn’t wear because of my hips but if I were dressed up this much I’d probably not be doing a lot of walking. Because I kept the rest of my outfit fairly neutral, the windbreaker doesn’t look so out of place even though it’s so bright and the pattern is loud.

If possible, my kitty is cuter in this photo than the last one. Her name’s Abby.

Are you a fan of this trend? Let me know x

Summer 2018 Fashion Wishlist

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Hey there!

First fashion post on this blog! Whooo!

Today I’m going to be showing you five things on my fashion wishlist for this summer. I make one of these lists every season as inspiration for things I might like or styles to keep an eye out for. I probably won’t buy any of these things, but these are items I’m lusting over right now!

  1. I love this sweatshirt from Modcloth because it looks really comfortable but is still really cute and classy! This is exactly the kind of thing I’d like to wear to a coffee shop to do work because I get cold easily.
  2. I saw a purse similar to this on Etsy, but I definitely prefer this one from ASOS. It’s so colorful and such a statement piece. I’d style this with overalls, a white t shirt, and plain shoes so that this purse could steal the show.
  3. This skirt from Madison and Mallory is such a cute jean skirt. I think the strong details of buttons and the big pockets would make me feel more comfortable wearing this if I’m feeling bloated. I think this would look really cute with a chill t shirt and my metallic oxfords.
  4. I don’t exactly know how often I’d get to wear this skirt, but I couldn’t not put it on this list. Ban.do just knows how to do cute clothes– it sucks that they’re a more expensive brand! I think this would look really cute the way they styled it but also just with a plain tank top or shirt. Sidenote: there’s also a matching jacket, but that seems like a bit much. Maybe.
  5. This shirt is also from Ban.do and I love that it’s a) feminst; b) looks vintage; and c) is so ridiculously easy to style. Even just with jean shorts, cute shorts, and a statement purse, this could look pretty fab.

What’s on your wishlist? Let me know in the comments 😉

xx

What I Wear to OT/PT

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Hey cuties!

If you read my post about my diagnosis and treatment, you’ll know the reason I tried so hard to get a diagnosis was because of persistent pain in my wrists and the rest of my arms.

The first big change in my treatment was the addition of occupational and physical therapy. I currently go to occupational therapy to get ultrasound treatment on my wrists, and i got to physical therapy to get stretches, exercises, and sometimes ultrasound for my shoulders (and, in the future, treatment for my lower back).

But the thing about my OT and PT treatments is that I can’t wear shirts with sleeves because I may need to get ultrasound on my shoulders, and I need past my elbows available for the forearm ultrasound.

The Basics:

  • No Sleeves: as mentioned above, sleeveless shirts are an absolute must.
  • Jacket: Hospitals are almost invariably kept at uncomfortable cool temperatures. Even in the summer, sometimes I take a light jacket or sweater for while I’m in the waiting room. This is also handy if I don’t feel like walking around with my compression sleeves out and proud.
  • Medium or Large Purse: Oftentimes things get sent home with me, and it’s nice to have a bag to put these things. Hand outs with my PT exercises on, resistance bands, schedules, braces… It’s nice to be able to put them in my purse instead of taking home a bag I’ll just have to throw out.

Example Outfits

Occupational Therapy

What I Wear to OT
In this outfit, I’m wearing a tank top my OT has to have seen on me half as many times as she’s actually seen me. I got this a while ago from Target, but you can find something similar here.

Because it doesn’t matter what I’m wearing on bottom, I usually just throw on jean shorts because it’s easy and always look cute. Today when I went I was too bloated for jeans (that IBS life though), so I wore these adorable polka dot shorts from Target that I just got. I’m so totally in love with them. I’ve already worn them twice and I got them on Saturday.

I wear my black Tieks when it’s hot out (similar, less expensive here), but if it’s cooler out I’ll wear my Clarks Cloudsteppers because they’re cushier. (link coming, their website is down).

Physical Therapy

Whenever I go to physical therapy, I make sure I’m wearing shorts or What I Wear to PT
leggings because I’ll usually be lying down. This more the kind of outfit I wore at the end of spring when it was cooler out, so now I’d probably wear shorts instead of leggings. But come on, this outfit is hella cute.

My leggings are from Fabletics. I totally fell for their deal that gets you to sign up– don’t make this mistake. The only way to cancel your membership that automatically charges you every month is to call them and cancel, which I think is terrible business practice. I also don’t think Fabletics leggings are worth the price. Instead, I’d recommend these from Forever 21 which are cheaper, but since they’re such a specific look it’s doubtful you’ll wear them so much they’ll give out (the only similar option I found that has any plus sizes from a store that I trust is these from Athleta, which only come in 1 and 2x– if you think I missed a store or have a recommendation of where to look let me know!!!).

I’m wearing a very old tank top from Victoria’s Secret (similar here)with a bralette underneath. Usually I’d either wear this outfit with my Tieks or with my Nike sneakers (relatively similar Nike style here).

 

If you go to OT/PT, what do you like to wear? Any tips? Any questions? Let me know in the comments! I’d love to hear from you!

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My Diagnosis and Treatment So Far

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Hey cuties!

Welcome to Chronically Cute 🙂 I’m so excited to be starting this project and to share my story and experience with others out there.

*Please note that I’m not a doctor, I can’t give you medical advice. Any information on this website is from my own experience and should not be taken as medical advice. I am simply sharing my story and experience.*

To start off this journey, I want to tell you the story of how I got my diagnosis and what my current treatment is.

Symptoms

Ever since I can remember, I’ve suffered from chronic fatigue as well as insomnia. Obviously these things are connected, but even when I do get enough sleep, I am still exhausted all the time. As far as the insomnia goes, I’ve always had trouble falling asleep since I was a child, but it got even worse in middle school. Currently I do take a prescribed sleep aid, but while this keeps the issue under control, it is not completely resolved (nor will it ever be).

The symptom that caused me to aggressively seek out a diagnosis was chronic, debilitating pain in my wrists, elbows, arms, and shoulders. Because I’m currently studying music, this pain has prohibited me from playing piano which has significantly affected what classes I can take and my success in others. This was the biggest inconvenience, however I also found that I can’t carry groceries/heavy things, do dishes without pain, or type or write too much without significant pain.

I’ve also been dealing with aphasia (trouble finding words), limited memory, forgetfulness, IBS symptoms, low back and hip pain, easy bruising, neck and head pain, as well as intermittent poor vision and balance issues.

The (Long, Long, Long) Route to Diagnosis

I started off seeking treatment from a chiropractor for the pain, because I’ve had a lot of success in the past with chiropractors treating my back and neck pain. However, months into treatment I still wasn’t seeing results, so I decided to seek treatment from a more specialized doctor.

Initially, both my chiropractors thought I might have EDS (Ehler Danlos Syndrome), because I have such tendency towards subluxations (misalignments of the spine), but it was decided pretty quickly that I don’t have EDS because I don’t have the hyper-flexibility. I actually do have pretty loose ligaments, just not because of EDS.

Who decided I don’t have EDS? A primary care physician who very carefully examined me and then told me my pain was caused by overuse and, without running any tests, referred me to an OT to treat my arms. He completely ignored my lower back pain and other symptoms.

I felt like I hadn’t been heard and that he hadn’t taken my condition seriously enough. Because he didn’t give me a referral, or fully explain to me why he didn’t think it was EDS, I had to take things into my own hands. After talking to some friends and other doctors (my therapist and chiropractors), I got an appointment with a musculoskeletal specialist in my city who luckily did not require a referral.

From there I was referred to a rheumatologist, who finally diagnosed me with fibromyalgia. I was so relieved to finally have a diagnosis… until we started talking about treatment.

Treatment

Here’s the thing about fibromyalgia: we know next to nothing about it. Some people don’t even believe it’s a real thing, there isn’t an agreed upon cause of it, and there aren’t many treatment options out there.

I was instructed to start a fitness routine and make other lifestyle changes and given a follow up appointment in case that doesn’t work to then discuss medicine options.

I will note now I am still waiting to take a blood test to check some vitamin levels, so I’ll update you when I hear about that.

Currently for treatment I am seeing an occupational therapist for my arms, a physical therapist for my shoulders (and eventually for my lower back), I’m still seeing my chiropractor, and I’m seeing a therapist. I’m currently working on finding a physical activity schedule that works for me.

So Basically…

I go to the doctor six times a week, can’t keep my apartment clean because all chores hurt, and have been reduced to using a rolling backpack because regular backpacks hurt my back and shoulders.

However, I also have an amazing treatment team, a very strong support system, and my cat is a very good nurse.

So things could be worse.

I will say, my diagnosis and treatment might change. I’ll keep you updated as I go through this journey, but I wanted to give you a starting point.

Talk soon

xx

We All Have Bad Nights

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Hey cuties.

I hate for my second ever post to be a little negative but such is life.

The thing about having a chronic illness is there are no guaranties.

I started today with a slow wake up in bed with a very cuddly kitty cat who was purring and put her paw on my knee and was just the cutest little thing ever. That’s a great way to start the day, if you’ve never had the pleasure.

I got so much done yesterday. And I was so productive today, too. I wrote blog posts, I made a plan for a photo shoot, I sent off my first assignment to my boss, and I scheduled a job interview. I went to the chiropractor, and I went to a creative nonfiction workshop. I got so much done.

On the flip side of that, however: my shoulders hurt, and my right wrist has been giving me trouble all day. The chair at the library that I sat in for the two hour workshop was so hard, my lower back and hips were killing me by the end of the workshop. I was so exhausted and out of it afterwards, I missed my stop on the train, had to get off and take it back a stop.

And there’s not much I can do after like eight PM. I didn’t feel like cooking, and I ended up just making a parfait. Because I can’t cook all that much, and I can’t really do dishes. And I can’t keep my apartment clean because I can’t physically do the cleaning: dishes hurt my wrists, picking things up hurts my lower back, vacuuming hurts… well, everything.

In summary: today had all the makings of a good day. I had a hot chocolate, I did a ton of work, and I had an amazing experience at the writing workshop I went to. My hard work on my resume and cover letter got me a job interview. I’m doing so much right.

And yet I feel exhausted and in pain and uncomfortable, because I have fibromyalgia.

Two days ago a bottle fell off my bathtub’s edge and within minutes it bruised and swelled and it still hurts. Sitting in the same seat for two hours made my back and hips hurt so bad I’m bringing a cushion next week. I’m twenty, and this is what I’m dealing with.

So it’s 1:14 AM, I have to be out the door at 10:40 at the latest for my physical therapy appointment tomorrow, and I only just took my sleeping meds. And right now, emotionally, I’m so drained and run down. And it’s so hard to be dealing with all of this and stay positive. Because I wake up feeling positive, I wake up feeling like I can get shit done, and even if I do I still might end the day feeling the way I do now: shitty.

Because I’m a twenty year old who can’t sit in a chair for two hours without pain. Because I’m twenty years old and it hurts to put weight on my wrists, or to write for too long. Because if the angle of my elbow is too tight while I’m typing on the computer my fingers start to tingle or go numb.

 

I may have had a good day, but the night’s been rough.

But as cliche as it is, tomorrow’s a new day. Here’s hoping it’s a better one, too.

 

xx

Oh My God I’m Starting A Blog

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Hey there cuties!

Welcome!!! I’m so happy to meet you. My name’s Robin, I’m a college junior currently studying music and I was recently diagnosed with fibromyalgia.

WHAT IS THIS BLOG?

On this blog, I’ll be sharing fashion tips for people with chronic illness (that totally apply to people with bodies that are more well functioning), tips for dealing with a chronic illness in your twenties (inspired by my own experiences), and stories from my life and how I deal with the day-to-day struggle of chronic pain.

WHO IS THIS BLOG FOR?

  • People with chronic illness looking for help (especially us youngins)
  • People who know someone or love someone with chronic illness
  • People who like fun, fashion, lifestyle, and reading about the human condition.

AKA: Anyone. Whether you need advice or just want to get some insight into what it’s like to struggle with chronic pain, this is a blog for anyone who wants to read it.

WHY IS THIS THE ONLY POST RIGHT NOW?

This very well may not be the only post anymore, but it probably is right now. That’s because I’m just getting started! Yay! I have a lot of fun posts and other projects in the work, but for right now you’ll just have to wallow in anticipation 😉

You can subscribe to this blog to get updated when I post by checking out the “Contact” page, and while you’re over there you should go follow my Instagram too, since that’s where I’ll be posting my outfit posts!

 

Here’s to a new adventure!

xx