Majoring in Chronic Illness Management with a Minor in Applied Nursing

Seriously guys. Every time I hear those commercials for continuing education that say things like, "get credit for military experience!" or "use job skills to get an accelerated degree!" I think... man... if only they gave out degrees keeping yourself alive with chronic illnesses. I have a lot of spoonie friends and every single one of them should get to add C.P.P. (certified professional patient) to the end of their title in addition to an honorary nursing degree for many of them. For those of you who don't get a peak into this aspect of my life, here are some of the behind the scenes tasks needed to function.

Medication Management

This takes up SO. MUCH. FREAKIN. TIME. You have to make sure all your meds are cleared with all your specialists because they don't chat, you have to make sure no new meds will kill you (allergies, interactions, effect on other conditions), you have to get the script, send it to the pharmacy (assuming they have it), pick it up or set up shipment, keep track of refills, separately order all your OTC meds and supplements, sort out medication or check if medication is presorted correctly, make sure any ED staff, EMS, or doctor can access what prescriptions you are on at any point in time, fight insurance, pay bills, likely deal with 2-3 pharmacies, infusion companies, specialty pharmacies, mail order pharmacies, and actually remember to take them and have rescue meds with you at all times. But yeah... just that. Add secretary and applied pharmacist to your CV.

Appointment Scheduling, Cancellations, and Heckling

This one might be my LEAST favorite. Doctors and other medical professionals have a HUGE range in availability, responsiveness, attitudes towards collaboration and remote patient contact. I hate talking on the phone. I hate talking to people I don't know in general. People find it hard to understand me and I have a hard time understanding them. It isn't a great combo. But I do it because I have to. Generally, my team falls into two categories: can see you within the week or can see you in the next 3-9 months. While I totally get the deal with both types, it can be more than frustrating for something to come up in between your 3-9 month follow ups. I am currently playing phone tag and portal spamming with my GI teams because things need getting done but have been less than successful.

As mycharliequinn so aptly explains going to the doctor as a spoonie: "going to the doctor when you're chronically ill is weird. It's like imagine everything in your house is on fire, and you're standing there and the fire department come[s] in like, describe the fire to me and maybe we can find out what caused it and put it out. And you can't just say everything so you're like... well the fire in the curtain is the biggest but the fire in the photo albums might be doing the most damage also the fire in the couch is really inconvenient. Occasionally the fire guy is like, well your tv is on fire so it might be electronic- fireitus but that would cause other things like fire in the DVD player. And you're like, oh yes. That's been on fire for years. I forgot to mention it because it's always been a relatively small fire. It's right next to the bookshelf which has much more fire. And then the fire guy is like, oh. I wouldn't worry about that, book shelf fire just happens sometimes."

Attending your "Weekly" Appointments

For me, I am currently on a "rather empty" schedule with weekly PT and Aqua PT sessions and biweekly infusions. Just getting those scheduled and being able to get to them and participate takes a lot of spoons and most of my schedule is based off these events.

Decide When to Brave Emergency Departments

Practically have an algorithm this one now but can be tricky, especially considering the "luck of the draw" on if your ED team has even heard of your conditions, actually pays attention to your chart, or can do anything to help. Chronic illnesses often leave you in this limbo where you're not about to drop dead but not okay enough to stay home and NO WAY can get in to see your 3-9 month doc who manages that kind of stuff. It can be awkward for everyone.

Tips for an Inclusive Halloween

Halloween can be a real struggle for kids (and adults) with disabilities. Here are some examples of aspects of halloween that are not accessible:

1. Walking around in the dark
2. Being surrounded by people who look different than normal
3. Sensory considerations with costumes
4. Sensory considerations with house decorations (flashing lights, motion activated stuff, jump scares)
5. Lots of walking/ rolling and physical accessibility of getting to house's doors
6. Talking to strangers (Trick or treat, asking for candy, responding to what your costume is)
7. Food allergies or inability to eat
8. Fine motor skills needed to grab candy

Here are a few adaptations/considerations that will help mitigate these challenges:

Food allergies/ inability to eat: Meet the Teal Pumpkin Project

The Teal Pumpkin Project is an initiative to include those with food allergies or special diets in trick-or-treating and to raise awareness. To participate paint a pumpkin teal (or print a picture and tape it to your door) and stick it on your porch. When you go out to buy candy, also buy some non-food items for kids. Examples: silly bands, party favors, bouncy balls, silly putty, vampire teeth or stickers! Party stores have lots of this stuff! Then, when trick or treaters come, simply hold two bowls and let the child choose! Believe it or not, there are even some kids who just don't like candy (real bummer for Halloween).

Resources and further details found here! This year they have even added a map where you can tell the world your house is participating!

Trick or Treaters who don't say Trick or Treat

There can be many reasons why someone might not verbal say trick or treat. They may be deaf, have anxiety related speech issues, be nonverbal, or just unaware that they are supposed to/why they are supposed to. Some may carry cards like this. Some may have a communication device. Some may just expect you give them candy. When in doubt, just give the kid some candy!

Decorating Your House

Keep in mind that for kids, terrifying is more likely to mean they will skip your house rather than bravely wandering forward. Be careful of extension cords as tripping hazards, poorly lit uneven surfaces, steps needed to climb to get candy ratio and other dangerous factors that might be hard to see at night, kids are unpredictable and hopped up on sugar. Also consider use of strobe lights, fog machines, and motion activated decorations as they may cause sensory overload, breathing issues, seizures etc. If you do want to use a strobe light, set it at a lower interval and it will be less likely to cause problems. Remember: its about the candy, costumes and fun...

Pro Tip: If you live in a house with more than 5 steps you might want to consider sitting down by the sidewalk during the main rush to hand out candy if you don't want to get skipped! 

Be patient and Enjoy!

Give that kid who appear to be indecisive a little extra time to look at his options, he might have allergies, motor planning issues, or just wants to get candy he actually likes instead of accidentally grabbing the stinkin pretzel bag. Don't force children to speak to get candy. Give compliments on costumes even if you have no idea what they just said they were but also keep in mind that a kid not wearing a costume may have sensory issues, fabric allergies, or is scared of costumes. Also, if a teenager, adult, or other non-kid comes to you trick or treating don't make them feel out of place, they're participating and nothing wrong with being a kid at heart!

HAPPY HALLOWEEN!

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)! 

Not being able to speak is not the same as not having anything to say! AAC Awareness Month

     Augmentative and Alternative Communication (AAC) is any form of communication that supplements or replaces speech. AAC can take many forms, from sign language to facial expressions, to printed communication books to high tech speech generating devices (SGDs AKA "talkers"). Basically, if it isn't speech it is AAC! High tech does not always mean better and just like study habits and treatment plans, what works for one person might not work well for another, even with the same diagnosis. AAC users are of all ages, genders, races, disabilities, and literacy levels but they all have either no speech, speech that is difficult to understand, or have trouble forming fluent speech.

      Remember that last time you lost your voice? I can almost guarantee you that you became frustrated at least once during that time period. Now imagine that you have an itch on the center of your back and you cannot speak. You're only given this sheet of laminate paper.

You can't sign, speak, or write. How do you tell me your back itches? Maybe ... "I/me/me -- help -- turn..." then directional words until your communication partner happens upon the place your back itches??

Sounds "no want"? What? Not the word you were thinking of? Oh well... good enough. NO NO NO!

     Everybody should be given access to words (and symbols). Words are powerful and they make us who we are and allow us to connect with others. They surround us from the moment we are born to our very last breaths. Words are more than just basic needs and wants. Words are social, personal, creative and powerful. Nobody should have that kept from them.

Tips for Communicating with a person who uses AAC:

• Be patient! One of the most frustrating things for me if being asked a question and halfway through your response they say something like, "oh, nevermind" or "don't worry about it". Similarly, group conversations can be VERY difficult when it takes you longer to respond. I often form my answer and by time I have finished my response is irrelevant. Don't be offended if I tend to be quieter in groups, I am listening! I know it is hard to take the time to slow it down but I guaranteed you the AAC user will be very grateful!
• Don't limit to yes and no questions. It gets boring really quick. That being said, if an answer is needed quickly, it might be helpful to ask yes or no questions or give a few options to chose from. Ex. "Julie, the house is burning and I need to know, should we use: unicorn power, ninjas or rocks to stop the fire. Unicorn power? (yes/no) Ninjas? (yes/no) Rocks? (yes/no) Something else? (wait for response using AAC). 
• Presume competence. Talk to us at an age appropriate level and normal volume and rate (unless known to have hearing or processing issues). POP QUIZ! (all based on actual experiences)
•  Billy is 40 years old Giants fan and uses a speech generating device. When talking to Billy you should:
1. HELLO BILLY BOY! HOW------------ARE---------YOU?!
2. Hi Billy, how are you? I saw the Giants won last night!
3. *turns to Billy's wife* Hi Betty! How are you? How is Billy doing?
4. HI. My-------name--------is---------S-U-S-A-N. NIIIIIICCEEEE TO MEEET YOU! YOUR CHAIR IS SOOOOOO CUTE!
• If you answered #2, wahoo! You get it. 
• Advocate with us and for us! 

Cool AAC Related Stuff:

Above: Video compilation project showing AAC users doing various activities and living their lives!

Above: An example of a SGD and computer controlled with the users eyes. For more information click here.

For a great website for AAC resources (use, teaching, awareness) click here (PrAACtical AAC)!

Examples of popular low and high tech systems:

• Tobii Dynavox Products
• Pragmatic Organization Dynamic Display (AKA PODD) (PODD is available in light tech (books) and high tech (SGD formatted for Tobii devices or iPad)
• Prentke Romich (makers of LAMP Words for Life and UNITY software)
• Saltillo (NovaChat, TouchChat)

Getting Hip with the Lingo

• Augmentative and Alternative Communication (AAC): includes all forms of communication (other than oral speech) that are used to express thoughts, needs, wants, and ideas. We all use AAC when we make facial expressions or gestures, use symbols or pictures, or write (Source: ASHA)
• Speech-Generating Device: Any piece of technology that turns user inputted text or symbols and turns it into spoken computer generated or synthesized voice. AKA a machine that talks for you.
• Switch Access: using a switch to control your AAC device (like an automatic door switch). Switches can be activated using touch, light, sound, breath, or even tongue movements!

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.  

“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

Life Hacks: Spoonie College Edition

      So I'm actually starting my 5th year of college going straight (fall, spring and summer except one summer). I have attended three different universities and started out only minimally effected by health problems (mostly GI, migraines) and wound up here, a professional patient needing complex care and supports. While each college had different systems, strengths and difficulties, I learned some valuable things about being successful in an environment that is largely unsuited for those with chronic illnesses. 

Here are some things I have learned along the way, in no particular order and not institution specific: 

1. Disability services: The process towards getting accommodations is LONG, often repetitive, and stressful. Often, accommodations are generic,  inflexible, and "base packaged" (you probably will get about (max) half the things you need to keep up and be successful and the rest is up to you. Here are some tips to get the most out of the services offered there (and your time and energy):
1. Start paperwork ASAP, pester those overworked doctors to get their part in before the semester starts as accommodations will never be retroactive. Also, make copies/ scans of every form or piece of documentation that leaves your hands. Things get lost all the time. 
2. Know which battles to fight. Back to the max 50% of what you need thing, often times you will receive basic accommodation and get some pushback asking for more. Is that note taker necessary for you to succeed or can you work out a way to record lectures, ask a classmate to look at theirs, use assistive technology and save your fight for extended time on tests where you might fail without it.
3. Send a personal note/make a personal introduction along with your formal accommodations sheet. In my experience, this has helped teachers relate to me, understand how my disabilities effect me and my learning/schooling, and also makes it seem a lot less like taking passes on things and more like "I expect this to happen, I don't know when or where or how, but here's a proactive heads up". It isn't necessary to name or intricately discuss your diagnoses to be effective.
4. You'll have to do a lot of accommodating for yourself/ working 1:1 with teachers. 
5. In most universities, students with disabilities have priority class registration. SUPER HELPFUL!!!
2. Housing: While living on campus may at first seem unappealing (again, varies in atmosphere by university), there can be a lot of benefits especially if you can't drive. 
1. They are required to have ADA accessible rooms. My room has widened doors, a lower peephole, lower closet bars, grab bars in the bathroom and shower, a fold down shower bench, and lowered light switches. 
2. Accommodations for single rooms can be made for those with compromised immune systems, PCAs, MCAD, severe GI issues, and other medical reasons. 
3. You can have a quiet place to rest in between classes, are close to dining (if you eat), and have access to evening events such as clubs, performances, and hanging out with friends without being too far from home or living in the Student Union Building. 
4. DOWNSIDE #1: If you have problems that can be exacerbated by fire alarms... apparently no one knows how to cook MFing popcorn.
5. DOWNSIDE #2: Germs spread fast and easy, may not be the safest place if you have a weak immune system without taking precautions.
3. Class Schedule Advice

1. What you want isn't always what is best. Sure, like nobody wants 9 AMs every day... or any day... but for me, the later in the day the more medication wears off, pain increases, spasticity increases, and overall deterioration occurs. Class is already hard enough to sit through, concentrate, learn and remember... don't make it harder on yourself for a potential 2-3 more hours of sleep. Or flip all that if that's how your body works.
2. Register ASAP. Classes fill up, plans change.
3. Schedule max number possible classes, attend all the first week and then drop as needed. That way you secure your seat, get to meet the professor, see the syllabus, see if there are major barriers in the class (i.e.  Service dog you're allergic to in a small classroom)
4. Medical care/ health safety
1. If you live on campus, tape a folder somewhere visible (wall, by light, dresser) and write EMERGENCY INFO on it super big and put in your medical emergency info, copy of your license/state ID card, insurance card (if you have it), and your school ID/student ID #
2. Start a file with on campus health. Even if they never care for you it is helpful for them to have your base information in case you need them in an urgent matter, have doctors far away, or just need something simple like a wound cleaned. Most student health offices will be able to do allergy shots, some will even help manage infusions. 
3. Introduce yourself to the campus chief of police, especially if you have the potential for reoccurring EMS issues like seizures, anaphylaxis, diabetes etc. They are usually first on the scene and can inform EMS.
4. Wear a medical ID bracelet. Bonus if it has a way to see all your info. See my post on my system here.
5. If you have asthma, MCAD, or immune problems I highly suggest purchasing a high quality, relatively comfortable mask to wear outside around campus. I pass smokers, high perfumers, and other triggers CONSTANTLY on campus. I use these and love them (recommend the ones with 2 filters for comfort and breathability).
   
5. Miscellaneous 
1. Join one club. Even if you only go twice a year, you may meet some people and you feel somewhat a part of things.
2. If you live on campus, get to know some people on your floor. They may be good for procrastination buddies, errand helpers, cards against humanity mates, or near family friends. 
3. Don't bring everything you own to move-in. Stuff accumulates anyways and it is a pain.

Hope this helps. It can be overwhelming but it IS manageable with the right supports. 

Spelunking 101

Okay, honestly this has very little to do with spelunking/caving but I jumped at the chance to use the word spelunking. Spelunk. lol. No, this post is about self-discovery and acceptance so if you don't enjoy sap stop reading here. As many of you know, I love quotes. I find other's words, art, and music to be so much more fitting than my own at many times in life and I hoard them in picture folders, notes on my iPad, and sometimes on my wall. They bring me comfort, guidance, and hope. This post is inspired by the amazing words of Brene Brown.

"Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy- the experiences that make use the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light." -Brene Brown

*******CW:mental health, nonspecific PTSD************

Bam. I can safely say that most of my life I have felt like an outsider both among peers and in my own skin. I felt like a spectator and bounced around from one click to another. Sure, I was invited to birthday parties, sleepovers, and physically included most of the time but I struggled to hold on to friends, relate, and feel comfortable around others. I have always found it easier to relate to older kids and adults. But that isn't what I wanted to talk about, I wanted to talk about the internal struggle, the fitting in your mind and being comfortable with your thoughts, feelings, memories, and anxieties.

I mostly write about my physical illnesses and superficial life but I think I've finally gotten to a point where I am comfortable with my mind and understand it enough to express in the hopes that it might help someone on a similar journey. Side note, many of us with invisible illnesses are often misdiagnosed with various mental illnesses and some symptoms can mimic conditions like anxiety, conversion disorder etc BUT many of the conditions I have also have comorbid mental illnesses. With EDS, bipolar, depression, anxiety, and eating disorders are common. It has taken me many years to figure out what symptoms/problems are of physical illnesses and which are mental and I still have a bunch of question marks. Mental illness is equally as important and dances along with chronic (physical) illness. PLEASE don't make the mistake I made of many years of trying to separate them and treat exclusively. I personally have anxiety, PTSD, depression and compulsive behaviors. Depression and anxiety run in circles around both sides of my family and are no stranger yet it took me a very long time to get to know my anxiety, how it manifests, what my triggers are, what works for me and what doesn't work for me. I have been on medication, acupuncture, meditation, yoga, exercise, diet changes, therapy, inpatient therapy, and much more.

My anxiety doesn't present in the stereotypical panic attacks, it doesn't disable me but it does significantly impact my mood, behavior, thoughts, plans, interactions, and stress levels. I have lots of different areas my anxiety clusters into, including but not limited to, social, medical, school, overstimulation, relationships, changes in plans, and unknown situations. I find comfort in sensory input (pressure, soft, certain noises, hugs, soft lighting), guided meditation, talking, listening to music, being in a comfortable space, and quiet. While I can no longer take medication because of my Long QT (blasted booger), medication did help lower my baseline anxiety. My PTSD is also closely tied to anxiety, especially when it comes to hypervigilence. Every time I am in public I have to locate exits, look for suspicious people, notice any police prescence, look for signs of deception... I would make a great cop... minus the seizing with loud noises and flashing lights haha. While I now function fairly well on the average day, the past couple years have taken hard work, introspection, listening, and a lot of trial an error to get to where I am today and I want to toot my own horn for once. I didn't exactly have a choice to begin this spelunking through my dark, it was honestly a matter of survival but looking back now I am so thankful I did. I am not cured. I am not patched back up. I still have plenty of days where I think the world would be better off without me or that all my friends actually hate me but I am able to recognize the forces behind that and accept that this isn't a me vs my mental illnesses battle. It's not a battle. It's just me. It took me 22 years but I have finally figured out that I can accept who I am now, my mind, my past, my body, my limitations, and still want to progress forward and make positive change. Apparently, the two aren't mutually exclusive.

To everyone who made it to this point and is struggling I hear you. I don't care if we have only spoken once, never at all, or you are one of my closest friends, if you want to talk, need someone to lean on, have questions, I promise to do my best to be there for you. I challenge you to at least peek at that cave. I challenge you to give yourself the slack you give your friends. I challenge you to get to know all aspects of your body.


That's all for now, enjoy your blasted fireworks.

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!

It's that time again! (EDS Awareness Month)

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.

I really do hope to post more later...stay tuned!

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:

1. 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.