Digestive Tract Paralysis (DTP) refers to a group of conditions that affect the motility, or speed in which your body digests food and liquids, such as gastroparesis (GP), chronic intestinal pseudo obstruction (CIPO), and colonic inertia (CI). I have been diagnosed with esophageal dysmotility, gastroparesis, and colonic inertia and all have greatly effected my health and lifestyle.
Gastroparesis, or paralyzed stomach, is a condition where your stomach takes too long to digest and empty your stomach. GP can be primary, secondary, or idiopathic and can range from mild to severe (little to no motility). Common forms of secondary GP are diabetic GP, Post-abdominal surgery GP, post-viral GP, and GP from eating disorders. Some symptoms of GP according to GPACT are:
Early Satiety after a few bites of food
Nausea (especially after eating)
Vomiting (often undigested food from hours or even days before)
Abdominal Pain
Hiccupping
Excessive Belching
Bloating
Weight Gain
Weight Loss
Loss of Appetite
Malnutrition
Dehydration
Heartburn or gastroesophageal reflux which is not controlled by acid suppressants
Erratic blood glucose levels
For me, dysmotility has hijacked my love of food and made me realize how much our culture revolves around food. Out to dinner, snacks at the movies, family meals, holidays, snacking, period chocolate eating, late night iHOP runs, and lunch breaks at work. When you can’t eat or can only eat a few types of food in small amounts, you miss out on a lot. Not to mention if certain food smells make you nauseous- my DTP friends can probably relate to being nauseous and starving at the same time. Food is everywhere. DTP is part of the reason I have a feeding tube which givesme freedom but is also a pain. in. the. ass. I have to be fed into my intestine to bypass my damaged stomach (intestines are more functioning though also damaged). This requires being attached to a tube and pump anywhere from 12 to 24 hours a day.
But DTP doesn’t just effect eating, it effects medication absorption, acidity levels, bowel control, hydration, energy levels, weight, and definitely clothing sizes (bloating is no joke). We need a cure, we are starving for a cure. While there are some treatments available they often come with difficult side effects or are invasive. More research needs to be done for a cure to be found! To donate or find out more please visit the Gastroparesis Patient Association for Cures and Treatments (G-PACT)!
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 withrecall, 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)!
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.
“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
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.
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!
Hello lovelies, in case you didn’t know because you live under a rock and you like it down there, May is Ehlers-Danlos Syndromes (EDS) Awareness Month! Now you know. My hope is to make several (possibilities range from 1-30) posts about various aspects of how EDS effects my life and things that I experience that I might not always talk about or might not always be visible (whooooooo!). But since this is the first post I am going to do a brief re-overview of what EDS is (to see last year’s post for more detail click here). I am not going to touch much on the new classifications/criteria mostly because I don’t quite understand it myself (sorry guys). Links will be throughout for more enticing information!!
What is Ehlers-Danlos Syndromes?
Ehlers-Danlos Syndromes (EDS) is a group of inherited connective tissue disorders that effect your body’s ability to produce strong collagen. Collagen is essentially the glue that holds your body together and is the most abundant protein in the body. With EDS, your collagen is weak or faulty. There are different types of collagen and each type forms certain types of tissue, bone, organ, muscle, and joint. The different types of EDS are due to mutations on different types of collagen (mostly joints vs mostly vasculature etc). That being said, if you have Vascular EDS you can still have hypermobility issues, it can get very complicated. EDS is a systemic disorder that is much more than just being bendy! Most types of EDS are rare, but hEDS/hypermobility EDS/type 3 is NOT rare and current estimates place its prevalence at around 1 in every 250. That being said, EDS is rarely diagnosed and rarely understood even in many medical circles. Every case of EDS is different, even when in families which can make it hard to diagnose. As my cardiologist says, “if you can’t connect the issues, think connective tissues”!
How is your life with EDS different than your “typical” peers?
Probably the major ones would be coping with chronic severe pain, having less energy, and having the schedule of an 80 year old (hospital visits, PT, OT, medications galore, pharmacy trips, naps). When I try and explain it to others some go with the “remember that time you got a bad case of the stomach flu, how you felt? yeah it is like that but we spoonies don’t get better” but I don’t really like that. It does a pretty good job on the comprehension level but it further separates us and points out our differences rather than our similarities. I, too, procrastinate on my schoolwork with Netflix. I, too, laugh at memes. I, too, want to graduate from college and have a job. I am not saying we have to ignore our differences but it can be hard enough to fit in when many of your peer groups activities are out of reach for you (sometimes literally haha). I also don’t talk a lot about my pain with others because I don’t want pity. My illnesses are a part of me but they do not define me.
If they discovered a cure tomorrow would you take it?
This one is hard to explain but probably not. EDS sucks but it is as much a part of me as having red hair is or speaking a bunch of languages. It has shaped me and my direction and made me tough as nails. That being said, if someone came to me with a viable pain medication we might have a different conversation.
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)
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
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.
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!
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.
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.
Chronicles of a Professional Patient 
