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?

  1. 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
  2. Most of the time: all of the above, car rides, rolls near water (parks, creeks etc), going to movies, swimming, vidja games
  3. 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?
  1. Going to loud, busy or bright places or flashing lights
  2. Meeting multiple new people at once 
  3. Anything that requires long periods of focus (ie watching a pot boil, watching a fast paced subtitles movie)
  4. Games I can’t win at (just kidding…kind of)
  5. Going out with multiple stops (chair loading and unloading is tiring yo)
When is it best to give you space?
  1. When I’m being a brat for no reason (fight me…I dare you)
  2. 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:
  1. I’m low on spoons
  2. I’m having vision problems
  3. I read it, swore to the unicorns I responded but actually didn’t, and found it three weeks later…
  4. I can’t form coherent sentences in English
  5. 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

But You Are So Young…

          But you are so young… words that pierce a hole right through my sternum. Yes, I am young but unfortunately chronic illnesses don’t ask for ID. Yes, I am young but I know kids, young adults, adults, and seniors with chronic illnesses. Nobody tells a diabetic kid they can’t be sick because they’re too young! Yet we (spoonies of various illnesses) get it all the time. My passport and birth certificate concur that I am 21. I am young but anyone who has heard the snaps and cracks of putting my joints back in place before I get out of bed each morning would swear that I am 80. I am young but take more medication and supplements than my grandparents. I am young but I wake up each morning to face a monster that knows my name, my fears, and my limits. I am young but my calendar is that of a retiree: volunteering with doctors appointments and physical therapy to fill in the gaps. I am young but I have friends my age and younger fighting for their lives and few that lost their battle already. I may not look sick, or I may, but I feel sick. I feel these disease nestle into every nook and cranny of my body. I put on a smile to mask the pain and refuse to slow down for the fear that I will be eaten whole by the flames. As Plato said, “be kind, everyone you know is fighting a hard battle”. While many of these comments aren’t said with ill intent, they can be destructive to someone not quite back up on their feet. I suggest going with a complement not related to pain, illness, or weight for the general population. My heart broke the other day when a fellow friend with gastroparesis (stomach paralysis) told me (after losing a lot of weight do to sickness and malnourishment) her mom had told her she looks better “lighter” after she had just been talking to her mom about how she’s really struggling with her GP. Pro-tip: Try crawling around in our bodies in your mind. If you were in constant pain and feeling defeated, would you want someone to tell you “you don’t look sick!”? Even if with good intentions the answer would probably be no. You can always ask instead how we are doing or if we have seen any good movies recently (chances are if it is a spoonie the answer is YES…we watch a lot of Netflix… 😉 ).

Harper Lee

 

"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:

  1. Good parking spots
  2. Nobody looks at your butt…nobody can see your butt
  3. Your shoes stay clean and nice for way longer
  4. You can get places really fast (as long as its downhill/flat)
  5. People all of a sudden become more chivalrous
Cons:
  1. You’re lower than everyone else
  2. You can’t always reach top shelves in stores
  3. Molehills really are mountains
  4. Sometimes even accessible places are stupidly unaccessible
  5. Clothes are not designed for the sitting figure

The EDS Bible

Finally it’s back in stock! This book is really the EDS Bible. It is written by Dr. Brad Tinkle who is largely considered one of the fathers of EDS and is very well respected in the EDS community.

http://www.amazon.com/Hypermobility-Handbook–Management-Ehlers-Danlos-Syndrome/dp/098257715X/ref=sr_1_1?ie=UTF8&qid=1458184415&sr=8-1&keywords=joint+hypermobility+handbook

I have been waiting for months for the book to come back in stock (no idea why) and it is finally here! I did my first breeze through it and it looks amazing. It not only details EDS, the many conditions that are comorbid (come along with), and research but also treatment plans, PT options, medication and supplement suggestions and much more! Highly recommend for EDSers and caregivers as well as medical persons who want to learn more about EDS. I will post again later once I have read more.