Me vs Gravity: Life with Dysautonomia

October is also Dysautonomia Awareness Month! Wahoo! Dysautonomia is an umbrella term for several conditions that result from a dysfunction of the autonomic nervous system (ANS). Many people know of the ANS from health class as being the system that is in charge of the “fight or flight” response, and you’d be mostly right. Yes, the ANS is in charge of “fight or flight” but more broadly, it is essentially in charge of regulating the automatic functions of your body. There are nine different types of dysautonomia: POTS, OI, AAG, Pandys, NMH, NCS, PAF, FD, and MSA. Learn more about them here. For this post I will only be talking about POTS and my experiences with POTS. I have secondary hyperadenergic POTS (hPOTS).

What is POTS?

As stated above, POTS is a neurological condition in which the ANS does not send the proper signals to the body to regulate blood pressure and heart rate (primarily, POTS affects the whole body). Normally, when a person stands, gravity pulls blood to the lower extremities. The nervous system senses this and sends a message to the blood vessels to constrict, sending more blood back to the heart and head. With POTS, this message to constrict does not get sent. Therefore, instead of the heart rate increasing by a normal 10 to 15 bpm upon standing, it can increase by more than 30 and can even double (when first diagnosed mine went from 68 bpm lying down to 189 bpm and remained that way for 10+ minutes). By affecting circulation, it also affects cerebral blood flow. Symptoms include orthostatic intolerance (dizziness), chest pain, headaches, GI cramps and dysmotility, inability to focus and concentrate for long periods of time, inability to read due to blurred vision, difficulty with recall, blood pooling, extreme fatigue, nausea, tremulousness, insomnia, loss of consciousness.

What causes POTS?

While there is some knowledge about comorbid conditions that are commonly seen with POTS and certain types of POTS have associated causes with the start of symptoms, it is unknown what is the true cause. For example, one type of POTS can occur post-concussion and we know that but not everyone who gets a concussion gets POTS. There is currently no cure and treatment is based on symptom management.

Common Misconceptions

POTS is caused by anxiety. POTS symptoms can mimic anxiety/panic disorders patients are often misdiagnosed or POTS is missed entirely because symptoms are deemed to be caused by anxiety. See research here.
POTS is caused by deconditioning. See research here. Exercise (for those allowed by their doctors) can be a crucial part of a POTS patient’s treatment plan but is not caused by deconditioning and cannot be cured by exercise alone.
POTS is just getting dizzy sometimes. POTS is a complex neurological condition that effects every patient different though almost all, if not all, have multiple organ systems effected.

Lingo

brain fog: cloudy feeling that hangs around and causes you to do stupid shit like flush the toilet three times, forget if you took your meds or just thought about taking your meds, and being unable to form a coherent sentence

What my POTS is like

***Disclaimer: This will by no means be an extensive list of symptoms or experiences and this is just how POTS effects me. There will also be crossover between EDS, GP, MCAD and possibly LQTS.***

I was formally diagnosed with POTS in 2015 though I had symptoms beginning in early middle school years. To save my fingers I am just going to talk about my current life with POTS and will probably do a more extensive post later, I just tired and lazy.

Remember the last time you had the flu and ached everywhere, slept all day and don’t remember half of what happened? Now imagine waking up feeling like that every day (and more! yaaay), this is one of my main struggles with POTS. Several factors contribute the fatigue including medication and adrenaline surges/crashes but on any given day my energy level is equal to or less than a sloth on Ambien. I take naps nearly daily, sometimes multiple times a day just to keep up with my peers. I have trouble filtering out stimuli, recalling things, producing speech, following multistep directions, and reading for comprehension.

Another big problem I have is blood pooling. POTS alone can cause bad pooling but with the stretchiness of my veins from EDS, it is much worse. I also have Raynaud’s syndrome so my hands and feet are always cold! The picture to the left is an example of blood pooling in my hands (on medication). This is what happens if I stand with one hand raised and one arm relaxed for two minutes. The white hand was raised and therefore has less pooling (gravity does all the work). After about a minute of sitting my legs look like my left hand. Now imagine a 11 hour car ride or a 3 hour lecture. This is why many POTSies wear compression stockings and socks to help our bodies circulate blood or why lying down with our legs up helps.

While POTS impacts many things in my life it does not mean I can’t do fun stuff, learn, and enjoy life I just need everything to slow down and take breaks. I have very limited energy and most is spent on school, existing, medical appointments, personal hygiene (showers are EXHAUSTING), and keeping myself alive. I have to worry about getting places without steps, lying down in the middle of the mall to keep myself from passing out, obsessing over hydration and medication schedules to maintain baseline and prevent things from spiraling out of control, and pretend to be a functioning adult.

Thanks for reading and make noise for turquoise (dysautonomia awareness color)!

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.

Life Hacks: Spoonie Edition

A friend of mine suggested I write a post about this and I live to please but really not sure how many good ones I can come up with. Eh, should be fun. Life hacks and good products for spoonies in no particular order:

Invest in non-bathing bathing supplies

dry shampoo: greasy hair is gross, showering is an olympic sport sometimes and this stuff is the bomb.com. I recommend this brand. Also super great if you’re in the hospital and don’t want to wrap IVs etc
wipes: same purpose but for the rest of your body. Also nice to get ones with aloe so you don’t become all dried up. I like these.

2. Keep a to go back stocked in your room/car in case of apocalypse or other unexpected events.

basically if you don’t look like this you
aren’t doing it right

change of clothes with warm layered option (don’t forget extra underwear)
extra day of meds
snack if you eat food
flashlight
KT tape and medical tape
eye mask for sleeping/blocking light
wipes
long phone charging cord or cord with power bank thingy (can never reach outlets in ERs)
carabiners, duct tape and zip ties (1000 uses)
water
first aid kit

3. Glass water bottles

this is kind of a weird one but especially for POTSies, who basically need to constantly drink water to survive, this is a good one
why: easier to clean, better for putting ice in, won’t give you cancer or whatever BPA does to you, durable, taste better
also recommend getting one with a straw, easier to sip if not upright, and don’t spill as much if you’re a spazz
This is the one I have an LOVE! I’ve dropped it hundreds of times and the straw doesn’t require a lot of mouth strength to drink out of (#edsprobs)

4. PillPack

Pillpack is a mail order pharmacy that pre sorts and packages all your medications and supplements and ships them directly to you. I have been using them for about a year now and love it!
they call your docs for refills for you
they accept most major insurance companies
pay the same copays as you would for CVS, Walgreens, Safeway etc and that is it
great customer support and online portal
billing options for credit card automatic/not, FSA/HSA etc
medication remind app
don’t have to spend time sorting meds (or wrongfully doing so)
they do my supplements as well as RX

5. Medical alert bracelets/information

- I have spent many years searching for the right type and run into the same dilemma often: classic medical alert (chain and metal with star of life) is recognized but limiting due to allergies, lack of engraving space, or constant changing information vs classier ID or EMR (electronic record) system might not be recognized by EMS.
  - NOTE: after many talks with EMS friends countless have said they’re only trained to look at wrists for IDs
- I have implemented a somewhat overkill system but I think its finally working:

- I use the MyID system for my EMR/bracelet/wallet card. It can be accessed by anyone with a QR reader, smartphone, computer, or phone. It is paired with an app/website portal that can be updated whenever and offers options to upload files, notify emergency contacts, write explanations of your rare and weird medical conditions and much more. I have found that of all the solutions for bracelets I have tried (flashdrive, traditional, wallet card, necklace), this works best. I also have a MyID wallet card in my wallet, and stickers on my phone case and school ID (like I said, overkill is best)
  - I have this one personalized and on the front is has
    “Medical Alert/ Julie LASTNAME/ “see back ICE for info”
  - Back has the access info, QR code, ID and PIN
- I also have 3 silicone wristbands that give quick information on the same wrist. I do this because those are important for quick access, they draw attention to the other bracelet, and they paint the picture that I have multiple issues and they should definitely look at my EMR
  - “MAST CELL DISEASE/ I CARRY AN EPI PEN”
  - “LONG QT SYNDROME/ SADS AWARENESS”
  - “MEDICAL ALERT/ EHLERS-DANLOS SYNDROME”
- BUT WAIT THERE’S MORE! At school, I also have a folder taped in plain sight on my dresser next to my bed labelled “EMERGENCY INFO” (useful for EMS, often gets passed to nurses too)
  - In it I have a copy of my
    - MYID info
    - drivers license
    - insurance card
    - any wishes in regards to my care
    - communication instructions (since if EMS are there I often can’t communicate well verbally

6. Mobility devices ≠ giving up ≠ bad

I started off using a cane, which I got from a drugstore, standing in line behind an 80 something year old man buying a cane and wanted to qualify my purchase with something like: “its a birthday present for my grandma…?”. It was one of the first times my disability became frequently visible and took a while before I got used to people’s questions, judgements, and my own stigma associated with it. But the cane wasn’t good for me so I moved to forearm smart crutches which people just assumed I had sprained my ankle or something and left me alone. I hobbled on those for about a year before my shoulders gave out. Then I got my rollator which I like too, but is still hard on my body. For me, transitioning to being a part-time wheelchair user was not very hard. It gave me more independence, less pain, got me places faster, and allowed me more options for bad days. It isn’t all magical though, people still judge or make comments, and there are still plenty of times I would rather just be able to walk or not have to worry about accessibility.
Most important lesson I learned in that journey was that I needed to do what I needed for my body, lifestyle, and pain levels. I’m not going to lie and say I don’t care what people think or that I’m somehow above it all, but for me the independence and assistance my chair allows me if definitely worth it.

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!

I’m invisible… You can’t see me!

Lol but actually in case you couldn’t tell by the cheeseball title, I plan to ramble on about invisible disabilities because it’s invisible disabilities week! It’s pretty self explanatory but an invisible disability is any disability that can not be seen and has no major visual manifestations. Examples include: diabetes, depression, EDS, lupus, schizophrenia, anxiety, Lyme etc. Some examples of visible disabilities might include: Down Syndrome, spinal cord injury, amputation, blindness, or muscular dystrophy.

It can be hard feeling so sick on the inside and looking “fine” on the outside. You also have to deal with people challenging your right to accessible parking spaces, store scooters, and even medical care. Since there is usually no way to tell the difference between someone with an invisible disability (ID) and a faker, I usually go with,”be kind, everyone you know is fighting their own battle”. One in every 5 Americans has a disability and many disabilities are invisible. Many of us get comments that we are faking being sick, when in reality, most of the time we are faking being well. We put on a smile and continue on with our lives despite the lack of energy, the intense pain, and feelings of hopelessness. To those of you who are close to me, you have seen me with my guard down, but for others you may have no idea I am in pain every day of my life. I don’t mention this for pity or to complain but more so in attempts to open up a dialogue, even if just an internal one. I want take this post and this week to spread awareness, compassion, and answer people’s questions if they have them. The love and support that y’all have given in various ways and modes truly amazes me.

Since I kinda missed EDS awareness in May except a blog post, I’m going to try and make an ID/EDS etc awareness video… Eventually. If I do, I will post the link here.

WARNING: Might just be one long rant…

Okay… so I wanted to touch on a bunch of different things that don’t have another home. I’m feeling very brain foggy/disorganized so if none of this makes sense… then it’ll probably at least be entertaining.
#1: How long it takes to get anything done in the medical world
Let me preface this with I ABSOLUTELY know this is not all on the medical professionals. There’s shit with insurance, documentation guidelines, hospital rules and regulations, and just overweighted caseload that influence this issue. But seriously, it gets ridiculous.
Some examples:

I met with a new GI July 22nd. He seemed on top of his game, familiar with my conditions, and agreed that action needs to be taken to get by nutrition etc back on track. He had lots of medical history, former testing, current summary… everything he needed. He ordered a SmartPill test (camera pill you swallow and it takes pictures and does testing as it goes through your GI tract… pretty cool) and an upper and lower scope (sticking cameras up your arse and down your throat…yum). I had already had a gastric emptying test to diagnose gastroparesis (delayed stomach emptying), but we had no idea the motility of my intestines or if they absorb any of the nutrients. Fast forward 4 weeks until my scheduled SmartPill test swallow. I had to go off all GI meds for a week (which means not only more of the daily yuck but near constant acid coming up my throat), get a ride to the hospital, fast beforehand, take off work etc etc. I get there and they’re (nurses) doing the pre-procedure checklist. They get to question #3 “do you have any implanted devices?”… “yes… but the doc knows about it… we talked about it” “Let me give him a call” *comes back 10 minutes later* “I’m sorry, the implant disqualifies you from doing this test, I have to cancel it… the doctor will give you a call (lol jk)”. Okay, so waste of time. I messaged my doc later (shock and awe… he never called) and asked if we could schedule the only other test one can do to get the same data as the SmartPill. His response: we will talk about it next appointment. So you’re thinking aight… that’s okay. Wrong. Not only is his first available not until mid-November, but his office won’t schedule any follow-up appointment until after I complete, and get the results back from the scope scheduled for September 14. So basically I’m SOL until at least December timeframe…. assuming that visit won’t just mean going over EGD results and him ordering the same test I asked him about months earlier. Don’t worry guys…it’s only nutrition.
It took my PT 3 weeks to write and sign a sentence saying “patient needs new custom wheelchair back to maintain posture and for support”.
It has taken my doc 5+ weeks (he was on vacation for one but still) to write and sign a prescription, note, and LOMN saying “patient needs custom bilateral AFOS”.
I’ve been waiting for records from one doctor for 13 months despite several verbal and written reminders to him and his staff.

#2: My two cents on the Epipen bull:

As someone who is literally allergic to life (sunlight, heat, cold, stress, talking, meds etc) and must always have Epi on my person and has unfortunately had many uses of the autoinjectors I am pissed. But not just by Mylan (jerk face mcugly butts) jacking up the price of Epipens (500%), but the fact that I have multiple friends who have to make the choice between life-saving medicine, therapy, and treatments and feeding themselves or their kids.

And we aren’t even talking about those without insurance. Most of my friends are lucky enough to have some form of health insurance (even if its crappy) and are still drowning in bills and medical debt. There is not a single day that there isn’t a medical bill arriving at my house and that is just ERs, hospitals, and doctor’s bills. Plus medicine, devices, PT, testing, surgery, and prolotherapy (not covered by any insurance as it is “experimental”). I have been incredibly blessed with kick-ass insurance (although still a PITA) and to be able to stay afloat in the bills. Despite all kinds of preventative and prophylactic treatments, there is still only so much you can do to keep ahead of things and emergencies still happen. Epipens also only are viable for a year. They come in a 2 pack but most need more to keep one at school, one in the car, and one on your person. For most, it is now cheaper to go to the ER for anaphylaxis treatment than to use their Epipens. Honestly, all I got is “fuck you Mylan”. No excuses, epinephrine is cheap, autoinjectors are relatively cheap. Not to mention their tax evasion strategies.

#3: Depression

Since the people who 1) even read this blog and 2) read all the way til now and aren’t asleep from boredom are probably the people who care, I saved this one for last. As some of you have noticed, I’ve been dipping into another depressive phase. Depression and me are buddies now so it’s cool. It is also normal and a big part of chronic illness so don’t go panic on me. So don’t be alarmed if I’m a) super clingy and annoying or b) super avoidant and grumpy gills … that’s kinda just how it goes. See previous post RE: things you can do to help.

Aight. That’s all for now….

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