Sick of Silent Suffering

Over the past couple years I have become increasingly open about talking, writing, blogging, and advocating about things that are important to me, including my chronic illnesses but I definitely wasn’t always this way and my family, for all their wonderful other qualities, is more the suffer in silence type. That is how I grew up and it wasn’t until recently I realized the toll it has taken on me. *Side note: I do believe that this system works for some people and keep them happier, I’m not judging.* Back to glorious me. The problem with suffer in silence is that, intentionally or subconsciously, it creates a wall between you and “everyone else”. After all, how could you possibly know that another person was facing similar challenges as you if they are also silent? One of my most valued friendships is with someone that I despised in high school because she was getting help for what turned out to be the same condition I had (she hated me back because I flew under the radar). We reconnected after my diagnosis and confessed our mutual hatred for each other and turns out we are very similar people with similar struggles and challenges and we keep each other sane (lol, if you can call it that L.B.N). Yes, that is a extreme example but hang in there.

We are social creatures. We strive to make connections with others, find the people who make us laugh and support us, and teach us about the world. We long to fit in, to be noticed, or even to be famous. But who here can say that they have felt it is easier or better or more desired to suffer in silence no matter how big or small the challenge is? I struggled through my education beating myself up along the way for not being able to figure out long division, for NEVER being able to spell things right, for trying to fit in harder than I tried to learn. Growing up in an area that prides academic achievement as a critical pillar of your existence, I felt like a failure even though I “made good grades and had good friends”. It wasn’t just academically either, family stress… silence, friend drama… silence, depression… silence, and pain… silence. Then I graduated and moved to Birmingham, AL. Which made it so. much. worse. There saving face is critical to social acceptance. It was suffocating for me and I’m fairly certain contributed to my physical and mental health getting so much worse. There is a great Miranda Lambert song (oh no Julie… not country. Yes. Country.) called “Mama’s Broken Heart” about a breakup and saving face. It “don’t matter how you feel, it only matters how you look… my mama came from a softer generation where you get a grip and bite your lip just to save a little face”.

So I left and moved back here and that is when I decided to stop hiding and start being open about all kinds of things and I have been amazed at where it has lead me. I have accepted the vulnerability that comes with exposing hurt, weakness, and challenges and through it have gained truly amazing friends, education, healing and perspective. I no longer feel totally alone in this world which I am remind of even in my worst days by the true connections I have made with others. I am learning to express myself, care for myself, and help others. I truly believe that vulnerability leads to connection and connection leads to understanding and understanding leads to compassion and compassion… well compassion is pretty powerful stuff.

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“The irony that we attempt to disown our difficult stories to appear more whole or more acceptable but our wholeness – even our wholeheartedness- actually depends on the integration of all our experiences including the falls. “ -Brene Brown

Physical Therapy

I have been in and out of physical therapy for about 11 years now. For the first five years, PT for me was limited to various joints after injury and was addressed from an purely reparative orthopedic perspective AKA they were only concerned with one joint at a time and repairing whatever injury I was currently recovering from. While this probably works for most people, with someone with a systemic musculoskeletal disorder, it wound up doing more harm than good. Because I was constantly pushing my joints without knowing it, occurring lots of damage and injuries and just overall having no idea what was going on. After dropping out my freshman year, I stumbled upon amazing PT #1. She was a rehab PT and helped answer the critical question of the time: “why, after years of PT, was I still getting worse?”. It was one of the first times anyone had looked at all of me as a functioning system that needed to be connected. I worked intensely with her for almost two years before she went on maternity leave and her practice switched to out of network. It took me a couple months to find the practice I am at now and I am forever thankful for everyone there, especially Gavin, my PT.

Younger athlete me would laugh at the seemingly stagnant pace of progress that I operate in now. She would laugh at how simple the exercises were, how slow they must be done to protect from injury, and how many little things knock me out. When I look back to all the sports, climbs, hikes, and runs I did it is almost as if it is a different person. Now I get high fives for rolling over, standing up without falling or passing out, and walking without assistance. It is almost silly to compare but at the same time, I believe it is important to know where you came from. I am making progress. I am getting stronger. I am working hard. It just looks different now.

The importance of having a PT that supports you, listens to you, and believes in you CANNOT be understated. For EDSers especially, this isn’t an area you should compromise in, trust me I have seen the damage it can do. Deconditioning, spasticity, injury, depression, general fuckitness. My PT and I have toughed it out through some major obstacles, setbacks, and flares. So heres to you, Sir Gavin the Brave for taking me on as a challenge and helping me learn to protect the function I have left and be patient with my body and mind. Seriously, I don’t know what I would do without you.

Where’s that Flintstones Chewable Morphine at?

I know I literally just said I don’t like talking about my pain and now here I am doing a post on pain. I decided I felt like it was an important enough aspect of me and EDS and since I don’t often talk about it, awareness month might be a good time for that. So here goes!

#spoonielife

I can not remember not being in pain, there may have been times where that has been the case but I thought I was normal until middle school (diagnosis backstory here). Nowadays, most of my chronic pain comes in one or all of the following forms: muscular (spasms, tears, fatigue and irritation from subluxations and dislocations), joint movements (subluxations and dislocations), mostly constant dull all over pain (I’m sure its a sign of being a demi-zebracorn?!), migraines (light sensistivity, eye strain, post-concussive issues, cervical spine subluxations, cerebrospinal fluid blockages, Chiari, position of the earth and sun, stress, lack of “good” sleep), GI pain (digestive tract paralysis, gastroparesis, mast cell activation in gut (MCAD) ), and other. Between allergies, MCAD sensitivities and Long QT Syndrome restrictions the only pain medication I can take is morphine and it gives me a lot of strange symptoms so I avoid it unless absolutely necessary. Pain management in EDS is almost always complicated due to the varying types of pain, comorbid conditions (including other pain disorders such as fibromyalgia), and severity and chronic nature of the pain. Because every case of EDS is different, what works for one might not work for another. I have zebra friends who manage pain with essential oils, some with opiates, some with PT and yoga, some with sheer willpower… everyone is different.

As EDS is a mostly invisible illness, people I meet and befriend are often shocked that I am in pain. I have learned to hide it well and have learned exactly how far I can push myself before the pain becomes too bad (though sometimes I totally disregard that knowledge). I really dislike that pain scale but on a good day I usually average a 5-6 and bad days a 8-9.5 for people who that means something to. Even well managed, pain effects your whole body, mind, and life. It does not have to control it, but it is a huge part of it.

Another thing I find people have a hard time understanding is the fluctuations or flare ups of chronic illnesses/chronic pain. This runs many into questions like “I saw you walking yesterday…why are you in a wheelchair now?” or “But last week you could unload the dishwasher, I saw you do it…are you just trying to get out of doing it?”. These questions can be prefaced either judgmentally or curiosity but are hard to deal with over and over again, especially on high pain days. Additionally, many of us face invalidation from medical professionals that impact our reactions and instincts, further complicating things. In my experience, leading a comment or question with “I want to understand but I’m confused…” usually gets a better reaction. Pain can be very isolating and can make us say or do things we don’t like. Pain sucks guys. DUH.

May the forth be with you all and beware of the revenge of the sixth!

IDK MY BFF JILL

If you don’t know that reference it is from an 2007 phone commercial. Classic.

Anyways, I wanted to write a post about technology as assistive technology (AT) and more than just soul sucking relationship ruining screens that give you cancer. I will talk about how I use my devices as AT and why they are important for me and because of such, will be talking exclusively about Apple iOS devices because that is what I use. I plan to do another post about iOS as AAC devices and switch access eventually so this isn’t the longest most boring post ever!

I am a die hard Apple fan. I was a die hard Apple fan before I got sick and have fallen even more in love since then. First, I am in no way paid by or speak for Apple or anything, I don’t know why people have to say that but they do so I will! Second, I am not going to talk about Android because I know nothing of Android. I know they do not have as extensive built in accessibility features but they work better for some and that is fine. Lastly, I’m mainly going to be talking about why I choose Apple products as a person with a disability and what features help me or might be of help to those with similar conditions. So leggo my eggo (not paid by them either 😦 )!

First I’m going to talk about some settings/features that aren’t technically accessibility settings (other menus) but that I have found to be helpful.

Visual Voicemail and Transcription

Phone>Voicemail

Apple’s visual voicemail system is one of the most underrated features in my opinion. For people with hearing/auditory processing issues, gone are the days of trying to remember which button to press to repeat the message…giving up and having to call VM all over again because you didn’t quite catch that middle part. New to iOS10 is a beta for automatic voicemail transcription. Now, when you click on a message and press play, the recording plays and an automatic transcription is written below. If it picks up a phone number it will be hyperlinked and a long press will give you options to call, message, or add number to contacts. For someone with Dyslexia this is a god send. I call/text wrong numbers constantly when I try to manually copy them down. Additionally, it is useful for those with hearing loss, auditory processing issues, or even if you want to scan the content in a meeting to know if it is urgent.

Find My Friends/ Location sharing in apps such as messages

At first I was not into having my mom be able to open an app and track my phone but it really has grown on me. This is definitely not the set-up for everyone (could be with someone other than your mom) but in times where I have gotten hauled off to the ER and they leave a VM on her phone saying “Julie’s in the ER”, being able to see which ER, if I am still there, or where I am if I am too confused to figure it out can be super useful. Again, not for everyone.

SIRI

Siri is great and almighty electronic goddess, obey her.

EMERGENGY HOME SCREEN MEDICAL ID

(to set up) Health App>Medical ID> Edit

At the minimum please put in your organ donor status, name, and emergency contacts. It can be accessed by EMS/ED staff even if you have a lock on your phone. To view access, get to the lock screen with the number panel, click emergency in the bottom left, click medical ID.

ACCESSIBILITY SETTINGS (iPad and iPhone though most are available on laptop just different paths etc)

******There are so many– I’m just going over what I personally use******

Display Accommodations

Settings>General>Accessibility> Display Accommodations

Another brilliant addition to iOS10 was the Color Filters setting. This allows the user to tint their screen to their liking/need. This is a godsend for anyone with photosensitivity, migraines, color blindness, eye strain, and other vision conditions. It allows me to turn my screen a nice pinky-orangey tint that I would otherwise have to wear my specialty indoor migraine glasses for. Another feature in this category is Reduce Whitepoint. This setting allows the user to reduce the intensity of bright colors on the screen by 25-100%. No longer need you be blinded by a white screen loading a webpage on ridiculously slow internet.

Speech

Settings>General>Accessibility>Speech

I wouldn’t be able to do much of my homework or social media without text-to-speech software due to eye strain, dyslexia, migraines, photosensitivity and reading comprehension issues. This is definitely one of my most undervalued helpers and it wasn’t until I was trying to read a textbook chapter on a different computer that I realize how much I rely on it and am assisted by it.

Features/Settings:

Speak selection: when on, this will give you a “speak” button when you highlight text (next to copy/paste etc)
Speak screen: dragging two fingers from the top down will start speaking items on the screen
Highlight content: highlights words/sentences/words and sentences as they are read
Typing feedback: options to have keys/words/sentences you type to be read back to you
Voices: different synthesized voice options for speaker for gender, language, and accent
Speaking Rate: how fast the voice talks
Pronunciations: tell it how to say certain words like Ehlers-Danlos

Reduce Motion

Settings>General>Accessibility> Reduce Motion

This one is really helpful if you have vision triggered disabilities or just don’t want all the fancy graphics for things like opening and closing apps.

Switch Control and Assistive Touch

Settings>General>Accessibility>Switch Control or Assistive Touch

These are more specialized/complicated but amazing accessibility features I plan to do a separate post or maybe video for but I will just share their purpose now. Switch Control is for people with physical, cognitive, or sensory disabilities who have trouble accessing all or many of their functions or their iDevices via direct selection AKA touching the screen with their hand or a stylus. It is a built in program that allows the device to be controlled and used entirely via 1 or 1 switches. Switches can be the whole screen, head movements, external switches (wired or bluetooth), sip and puff (controlled by mouth movements) and more! For an example of switch access by someone who can do amazing things with it, watch the video! Assistive Touch is basically an accessible menu for people who have physical challenges performing actions like pinching to zoom.

Subtitles and Captioning

Settings>General>Accessibility>Media> Subtitles and Captioning

I actually only recently learned about this feature but if you like subtitles or need them, make sure you have this setting turned on and it will automatically turn on subtitles when available in apps like facebook, netflix, chrome etc.

Accessibility Shortcut

Settings>General>Accessibility> Accessibility Shortcut

Another relatively new feature this one can wear many different hats based on your needs. What is does is set a shortcut on/off switch for a selected accessibility feature by triple clicking the home button. On my phone, this turns on the pinky-orangey tint from my Color Filters settings. Since I only use that at night usually, it saves me a couple clicks turning it on/off everyday. On my iPad, I have it set to turn on Switch Control (more on that later) for when I use that.

Flashies: A Saga of the Photosensitive

Anyone close to me has now acquired an extra sense, the spidey sense of disability (I know, being friends with me comes with some real perks!). For many who don’t have a disability or are exposed to people with disabilities (PWDs) there are MANY things that get picked up by your senses and determined unimportant by your attention and fly under your radar… and therefore most of you never think about this stuff. Today’s post is a rant about all those things you probably never thought about/ thought mattered in hope that someday, somewhere, it will be useful knowledge to you. I’m going to break it down into categories for your organizational pleasure: (or just so you can skip to the stuff you might care about haha) physical accessibility, sensory processing, and photosensitivity/flashing lights.

Physical Accessibility

This is probably the most on-your-radar one but still very important. First, PSA, if I hear one more person say, “xyz is accessible except a few steps” I will hulk smash. In terms of physical accessiblity, stairs are a no. Doesn’t matter how many. Just no. Love, every person who uses a mobility device. Just saying… and in case you don’t think this happens… it happens all the time.

yeah. thanks dave.

*I know physical accessibility is not limited to just wheelchair users but we would be here forever, so I’m just talking wheelchairs for now*

Okay, it is Friday night and you want to have some fun. If you use a wheelchair your spidey senses are tingling. Things that go through your head:

does that restaurant have stairs?
do I remember if their bathroom is accessible?
does public transit go there? can my wheelchair fit in Smithy’s car?
is the place maneuverable? (particularly small places, clothing store racks are hell)
what is the height of the tables?
Other places:
is there a ramp?
will I be able to reach things? (shelves in grocery stores, bookstores)
will I be able to carry what I buy?
can I get there?

(video as a parody response to the Rio Paralympics Promo Video)

Sensory Processing

Aight so this one most of you probably don’t have as much exposure to, except maybe if you know someone with autism. It is not something you can see, and at least for me personally, not something I talk about a whole lot if ever. There are a whole lot of sensory related issues and often come comorbid to conditions like Autism, EDS, Down Syndrome, Chiari, and Schizophrenia etc. One condition associated with this that I have is called Sensory Processing Disorder (SPD formerly Sensory Integration Disorder) and is very similar to how it sounds. Basically, my brain has trouble processing and evaluating sensory information such as light, touch, sound, taste, proprioception (where your body is in space), vestibular and motor control, etc. I divide it into two stages: input and processing.

With SPD:

sensory information coming in can be converted to extremes (under processing or over processing)
people can experience heightened vision but depressed sense of taste
can lead to overstimulation which is when all the input from the environment you are in becomes too overwhelming and starts to become incomprehensible

This video does a good job of trying to represent overstimulation (cw: changing lights and sounds) https://www.youtube.com/watch?v=plPNhooUUuc

Source (good article on SPD)

For me, even having two different people talking at the same time makes it hard for me to understand the person I am talking to and I use a lot of context clues and lip reading to try and help my brain figure it out

people can be sensory seeking or sensory avoidant or both

sensory seeking is like it sounds, seeking out input that is comforting (weighted blanket, soft fabric, hugs, running water)
sensory avoidant is like it sounds, avoiding input that is too extreme or not liked (textures of food, tags on clothing, bright lights, strong perfumes)

looks different for everyone
things that you don’t notice or can ignore may overwhelm us or we are unable to filter it out (i.e. buzzing of florescent lights, fans on laptops, tapping of pencils)

For me, I am extremely sensitive to light (see next section) and have a mix of levels on other senses. I had no idea everyone didn’t see the world like this until I got to college and learned about it in class. It is hard to describe what it is like in writing, but the video comes pretty close. For me places like the movies, grocery stores, classrooms, hospitals and shopping malls are overwhelming due to all the noises, types of lights, tile floors, people, smells, and unpredictability. New places are also anxiety provoking because I don’t know if they will be too overwhelming.

Flashing Lights/ Photosensitivity

Flashing lights are everywhere. I guarantee you you can think of some examples, I also guarantee you can’t think of 2/3 of them unless you’ve spent enough time around me. For me, flashing lights (and loud noises and extreme emotions) trigger seizure like episodes (thanks Long QT). For others, flashies can trigger seizures, migraines, fainting spells, nausea, disorientation, and more. Some flashies are unavoidable unless you are Thor (thanks bro for the lighting and thunder combo…really helpful), a movie producer, or a video game designer, but many are/ are able to put less risk in situations for people like me. Fun fact: in video game ratings in America they have to list strobe scenes in the rating but movies, concerts, plays, amusement parks, escape rooms etc do not.

this bloody scene

For funzies let’s go through some examples of flashies:

lightning
lightning in movies
fire effing alarms (seriously I will come teach you how to make popcorn)
camera flashes
camera flashes in movies
sirens
strobe lights in plays, concerts, movies, rides, clubs etc
quick scene changes (lumped in because can have same effect)
explosions
gunfire in movies
lightsabers (and lightsabers in movies)
damn apple accessiblity feature where the camera light flashes when you get a notification
did I mention camera flashes?
70% of the last 5 Harry Potter movies

So what? Expect me to just have shitty dark pictures of my kid’s birthday in a gloomy restaurant?

Well yeah, if you don’t mind…

RESPECT THESE SIGNS
OR I WILL HAUNT YOU
THE REST OF YOUR LIFE 😉

Just kidding. As with most of these things, unavoidable is unavoidable. But here’s what you can do: opt to turn your flash off when not needed or try to aim the flash away from randos, ask before taking flash pictures in groups, take a mental picture, don’t burn popcorn, give warnings if you are directing plays, post signs, note time stamps in movies if watching with a sensitive friend so you can warn them, turn off that damn feature unless you need it because your deaf of HoH, and of course, be courteous and aware of your surroundings. It can be awkward and impossible for some to assert themselves in situations like this, so if they do please don’t give them shit. It was probably hard for them to do.

Phew. You better feel more edjamakated now. Julie out.

Care about Rare

February 28th is Rare Disease Day.

Now, if you’re like me you might roll your eyes at this one. In a time with social media, ice-bucket challenges, awareness months for every condition known to man, ribbons, and GoFundMe pages, awareness of something is almost always going on. Let us all admit we are burnt out on breast cancer awareness. Don’t get me wrong, breast cancer sucks but the funding and publicity are not correlated with its prevalence, deadliness, or need for awareness. Additionally, caring burnout is occurring due to politics, wars, tragedies, disasters, and maybe even the loss of your beloved pet rock “Rocky Balboa”. Whatever is going on in your life, I hear you, your frustrations and hurt are valid.

Now let me tell you about why Rare Disease Day is important.

First off, lets get our knowledge on because who knows anything about this stuff, let’s be honest. According to the Global Genes Project:

Orphan drugs are drugs specifically for treating rare diseases.
In 1983, the US passed the Orphan Drug Act which allocates grant
funding to companies researching and developing orphan drugs.

in the US, a rare disease is any condition that affects less than 200,000 people (under 50,000 in the UK)
80% of all rare disease patients are affected by approximately 350 diseases
50% of people with rare diseases are children
35% percent of deaths in the first year of life are attributed to rare diseases
30% of children with rare diseases will not live to see their 5th birthday
~50% of rare diseases do not have a specific foundation supporting or researching their rare diseases
Only 5% of rare diseases have ANY FDA approved treatment options

Okay, now we have the numbers, so what?

Before I get to the give away your money or talk about it phase, I want to try and tell you what it is like to live in the rare world. It is scary, it is hard, it is time and energy consuming, and often times… seemingly hopeless. This will not be sugarcoated, so skip ahead to the next meme for a jolly good time.

It is going to specialists only to have them say, “that’s just how it is” or “I’m sorry, there is nothing we can do”. It is knowing more about (or even about) your condition than many in the medical fields. It is, unfortunately, getting misdiagnosed, mistreated, or misinformed. It is having your second opinion being google… because there is no one else and you aren’t sure if what the doctor is saying is true or correct or even sane. It is constantly having to be your own advocate, nurse, management team, awareness spokesperson, and cheerleader. It is weighing being misunderstood or mistreated over getting urgent medical care. It is putting on a smile when all you feel like doing is crying. It is that moment of panic when you have a bad day that you will need help and can’t be all alone. It is being surrounded by people who love and care about you, yet feeling alone. It is making plans with your other rare friend to have a movie marathon but spending the whole time talking about and decompressing about your illness, doctor’s visits, anxieties, and fears. It is carrying a backpack instead of a purse because you need your medications, testing supplies, and toiletries so your mouth doesn’t taste like vomit the rest of your adventure. It is envying people who can say, “oh, I have ____” and not have people say “what?”. It is knowing that if you wound up in the ER and couldn’t communicate and people didn’t have your information… normal treatments could kill you. It is having pre-programmed phrases to spit out to explain your conditions, witty comebacks to counter arrogance, and feeling the need to justify yourself so people understand. It is getting told you could fix your diseases if you prayed harder. Or drank only kale. Or by righting your sins. All from random strangers. Above all, it is isolation and uncertainty.

So what can you do?

Spread awareness on social media, not just today…any day
Talk about rare diseases
Donate to rare disease research
Donate to companies working on orphan drugs
And last, but certainly not least, know that you are never alone: with our without a rare disease!

Click on picture to learn more or donate!

What Can I Do To Help?

Dear Super Awesome Friend,

Loving someone is hard, loving someone with chronic pain and chronic illnesses can add some uncharted territory. This is my attempt to help some friends out who have been struggling with the answer “I don’t know” to the amazingly beautiful question of, “what can I do to help?”
First, know that while unsatisfying for your drive to be useful, fix the world, and get home in time for dinner, your presence and attention mean more than you might ever realize. Illness is lonely, isolating, and unpredictable. Waking up after a night of pain and other fun NSFW wonders to random memes, emojis, or stories can make a shift from bad day mode to good day mode (ze mind is a powerful thing you know). Obligated to text me every day and respond to everything I text you? Nope, Chuck Testa! While I hate saying no and canceling plans, I would almost always rather be invited (unless it’s a chocolate festival in which case all self control will be throw to waste and the gastroparesis gods will reign down their mighty wrath). While each of you can probably call to memory many times where I have no taken care of myself or made bad choices, for the most part I know my limitations all too well.
Here are some FAQ on this topic:
What are some things that are easy for you to do?

All the time: laugh, watch netflix, talk about what I watch on netflix, watching disney movies, fix things, cards or board games, singing disney songs in rediculous voices
Most of the time: all of the above, car rides, rolls near water (parks, creeks etc), going to movies, swimming, vidja games
I HAVE SO MANY SPOONS AND GOT MORE THAN 3 HOURS OF SLEEP: rock climbing, nature, camping, amusement parks, museums, and frisbee

What are some things that you don’t like doing?

Going to loud, busy or bright places or flashing lights
Meeting multiple new people at once
Anything that requires long periods of focus (ie watching a pot boil, watching a fast paced subtitles movie)
Games I can’t win at (just kidding…kind of)
Going out with multiple stops (chair loading and unloading is tiring yo)

When is it best to give you space?

When I’m being a brat for no reason (fight me…I dare you)
When I’ve been in a spoon drought (see above)

You haven’t texted me back, did I do something wrong? Do you hate me?

Probably, most of you are terrible people. But actually no, usually it is one of the following:

I’m low on spoons
I’m having vision problems
I read it, swore to the unicorns I responded but actually didn’t, and found it three weeks later…
I can’t form coherent sentences in English
I physically don’t have my phone

I feel like a bad friend for not knowing how to help/what to do/what to say….

The fact you feel that way actually means you are a good friend and just not a psychic or a unicorn… we all can’t be awesome ya know. But actually this one is a tough one because so far none of the answers I have given people have been reviewed as 5 star customer service. I guess all I can say is that I hear you and I understand and view nothing more or less of you measly humans.

Am I supposed to laugh at your twisted jokes about death and illness or is that in bad taste?

You can laugh if you want.

I’m scared but I don’t want you to know or worry about me because apparently there is some precedent for supposedly being able to tolerate scary diseases and pain and suffering of a close friend and I have to hold myself to that standard…. oh or I could accidentally kill you…

It is okay to be scared, I’m scared too. Give yourself time.

I hope this helped someone but if not at least I got a few more memes into play.

Love you fools,

Julie

"Falling Behind"

I’m a junior in college.
Actually, well, I should be a junior in college.
I’m actually a sophomore in college by credits, junior by age and semesters.
But I’m catching up!
No, actually I’m not. Still chugging away at what feels like a cruise controlled speed. Chugging away at the arbitrary set number of hours you must sit in school until deemed “educated”. And I’m readily becoming more and more frustrated trying to arrange class schedules, accumulate credits in any way possible, and get a good enough grade so that I can move on. GMU has this nifty program called Degree Works that takes your credits and tells you what you still need to graduate, which classes fill that requirement, which classes have qualifiers, ya get the drift. According to Degree Works, after almost 9 semesters now, I am officially half way.

College is not friendly towards students with chronic illnesses. Despite many universities attempts to bridge the gap with programs like disability services, the odds are still stacked against you. Many classes will drop you if you have too many absences (sometimes even 1), regardless of your ability to keep up with the work. College is also a breeding ground for germs, poor eating and sleep habits, and stress. Being physically able to get out of bed is one thing, going to class another, and then absorbing it? How about homework? Most homework either involves reading, computer use, studying, or essay writing. Most of those tasks are near impossible when eye strain, fatigue, migraines, photo sensitivity, concentration issues, and other fun cognitive issues plague your daily life. Reading that may take most people 30 minutes takes an hour for me. While most college students become sleep deprived zombies around finals too, finals for students with chronic illness can be especially challenging. Most people get sick during finals but because the pressure is on, non-chronically ill students are more likely to go to class, despite being sick and often times, contagious. This puts those of us with weaker immune systems at risk for getting very sick during finals when we are already probably pushing our limits.

All of this and more makes me look at that half way mark and want to cry, but not tears of joy. Finishing college seems impossible (all my family out there chill, I know its not impossible and I’m not dropping out). It makes me sad because before I got sick I was so excited about college. About life beyond school. About making a difference. Now I feel like that motivation and joy of education is being slowly stripped from me. I don’t want it to be this way. I want college to matter, to be something I enjoy rather than just another constant struggle. I’m scared this fog in my brain will never clear. I’m okay with “falling behind” but I’m not okay with staying behind.

#Wheelchairproblems

In honor of Bertha’s retirement (my current chair), and the arrival of my new chair (name TBD) I thought I would make a post about some of the pros and cons of being a wheelchair users along with some illustrious stories and bits-o-wisdom.

RIP Bertha Unkown-2016

Bertha fixed with 6 washers and a screw

Thanks are also due to Bertha for she has taken me places that otherwise would have been out of reach, and allowed me to get one step closer to being a normal college student.
A couple of days ago me and the boyfriend attempted to go visit the Air and Space Museum in DC. We drove and parked at the metro and metroed into DC. Someplace in the literal TWO blocks between the station and the museum, the screw that holds one of the small front wheels in disappeared. This means that the pin that goes through the wheel (essentially the axel) was not held in place. #howdoesthisevenhappen (by the way this was Sunday….when it was snowing in March and cold as shit) We had to call a Lyft driver, hope that they would have a car big enough to fit my chair, and get a ride to a hardware store a couple miles away (second time this has happened). Upon loading the chair, one of the spacers must have fallen out too. Thankfully the fellas at ACE Hardware in NW were happy to help us out. That being said, by the time this whole ordeal was over, the museum was closed so we headed back to VA. #wheelchairprobs

Pros:

Good parking spots
Nobody looks at your butt…nobody can see your butt
Your shoes stay clean and nice for way longer
You can get places really fast (as long as its downhill/flat)
People all of a sudden become more chivalrous

Cons:

You’re lower than everyone else
You can’t always reach top shelves in stores
Molehills really are mountains
Sometimes even accessible places are stupidly unaccessible
Clothes are not designed for the sitting figure

On Memories of Easier Days

I was looking through pictures on my computer desperately searching for this one picture I needed for a project. After a couple of minutes I found the picture and immediately quit the application, hoping I had escaped in time. A sharp pain starts in my chest. I remember climbing mountains, and going on adventures. I remember not having to plan my life around medications, doctors, and energy fluctuations. Spontaneity. Freedom. Carefree. Worry-free solitude. I have always been some degree of sick, in some degree of pain, and had some restrictions, but nothing compared to this. I live with constant anxiety about flare-ups, falls, canceling plans, and being alone when needing help. It’s exhausting. My 21st birthday is rapidly approaching and planning the celebration has been yet another reminder of limitations. Sure, you can break those limitations: eat whatever you want, do something physically demanding, or go to a new place where you are unsure of what you might encounter but theres a catch. Breaking rules and limitations with my body can sometimes leave me dealing with the aftermath for days or weeks following. It can mean anything waking up in the ER with no memory of what happened to simply being unable to get out of bed for days. So, is it worth it?

For many people a 21st birthday includes hanging out with friends and family, and having their first (legal) alcoholic drinks. Alcohol is definitely out of the question because of the potential for serious medication interactions (RIP Julie). In my family, tradition is to have a family dinner at the restaurant of your choosing and then desert and presents afterwards at home. For me currently, eating causes pain, nausea, vomiting, and other TMI GI issues. I could go out and eat something I’ve missed and spend days 2-6 of year 21 dealing with the repercussions, or I could plan something not food, alcohol, or high energy centered. Some 21st eh?

I miss not having to worry about spoons, building accessibility, supervision, and germs. Those were easier days.