My Truths: Yammerings of a newly 24 year old

Disclaimer: This is not a J.K. Rowling post. I have no idea how it ends writing it now. It may make no sense ¯\_(ツ)_/¯. This is basically just a list of some random thoughts.

I believe you can accept and love yourself and still want to change parts of yourself.
I believe the ability to adapt is crucial to finding happiness.
I believe that differences are necessary for society.
I believe that artists and musicians do more for the greater mental health of our stress ball of a society than we give them credit and resources to do.
I believe we can all benefit from giving more people the benefit of doubt.
I believe that vulnerability is critical to human connection.
I believe that there are times to push and times to rest in life and that finding the perfect balance may be impossible but we shouldn’t stop trying.
I believe that sickness can be a big, important part of your life and still not define you.

k thanks i’m here all week



Feeding Tube Awareness

February 4-8th was Feeding Tube Awareness Week. This post will be mostly about types of feeding tubes and feeding as well as some possible reasons why someone might use a feeding tube as I have found few people actually know much about tubes. Ideally, I will also be creating posts about tips and tricks for living with a feeding tube and my experience as a young adult who uses a feeding tube. *lol I tried to get it done on the actual week*

Types of Feeding Tubes

Nasal Tubes

The two main types of nasal (up the nose) tubes are nasogastric (NG) and nasojejunal (NJ) tubes. These are thin, flexible tubes that are inserted through the nose. Both tubes are primarily for temporary and trial use and can often look similar from the outside. The main difference between these two tubes is where they go inside the body. These tubes can be left for 2-6 weeks per tube.

NG tubes are tubes that are inserted through the nose, go down your throat, and end in your stomach. These tubes are common inpatient and outpatient for acute needs or for temporary trialing of tube feeds, however, some patients chose to use NG tubes long term as (with training) they can be inserted and removed at home and therefore can only be on their face while feeding (usually at night in those cases)

NJ tubes are tubes that are inserted through the nose, go down your throat, through your stomach and the first part of your small intestine and into your jejunum. These tubes are less common and need to be inserted by a doctor with imaging to guide the tube into the right place. Many patients have NJ tubes if they have significant vomiting, have an improperly functioning stomach, or cannot tolerate feeding into their stomachs.

Surgical Tubes

There are three main types of surgically (or endoscopically) placed feeding tubes: gastrostomy (G tube), jejunostomy (J/ “straight J” tube), and a gastrojejunostomy (GJ tube). While these are considered more permanent tubes, they can be removed if the tube is no longer needed. These tubes are placed by creating a stoma, or opening that allows the tube to connect to the stomach or intestine, essentially it is an extreme body piercing.

Low profile G tube on left, traditional g tube on right

Within these options there are also some differentiations based on the type of tubing and the securement device. Options vary from traditional tube (aka danglers) to low-profile tubes that sit more flush with the skin. Tubes can also vary in how they are held in place on the inside: balloon (filled with water), a hard bumper, or a capsule shaped bumper. Most tubes need to be changed out every couple of months but some can be changed out at home by the user!

That girl has a feeding tube but just ate some cookies! They must not need the tube!

There are many different reasons why someone may need a feeding tube. Some people are able to eat and drink and still needing a feeding tube. This can happen either because they have a very restricted or unreliable diet/food tolerance or because they cannot eat or drink enough to sustain themselves purely on oral intake. Some people can eat, but it makes them very sick and so they only eat on special occasions, however there are plenty of people with feeding tubes who cannot eat or drink at all (NPO). Whether someone can or can’t eat orally does not correlate to how much they need a feeding tube or how sick they are!

What are some reasons someone needs a feeding tube?

There are countless diagnoses that may require a feeding tube such as dysphagia, cancer, gastroparesis, mast cell disorder, IBD, spinal cord injury, muscular dystrophy, ALS, MS, and many many more! Generally, people who need feeding tubes either: have difficulty swallowing, difficulty digesting/absorbing their food, have risk for aspiration (breathing food into lungs), cannot chew, have multiple food allergies, or have a gastrointestinal disorder that impairs their digestive tract.

#rarediseaseday

Wednesay is Rare Disease Day 2018! This is a day dedicated to people who live with rare diseases, awareness of rare diseases, fundraising for research, treatments and cures, and a day for those of us with rare diseases to share our stories. graphic about rare disease day with logo

Living with a rare disease can be incredibly isolating and at times, frustrating, scary and  challenging. You get used to knowing more (or anything) about your disease even when talking to medical professionals. You get anxious trying new things or going new places in case something happens and the medical staff don’t know your condition. Every year during rare disease day I strive to spread awareness not only for rare diseases (most of which have no cure), but also for orphan drugs and the researchers and companies supplying them. Orphan drugs are drugs that are designed for a problem or disease that is rare. They often struggle to find funding and complete clinical trials and most do not get through the trial phase. Additionally, if these medications or therapies do make it past clinical trials, they are often ridiculously expensive (think >$10,000).

For a list of known rare diseases click here

 

rare-disease-cloud-e1444332661951.jpg

Resources for Ehlers-Danlos Syndrome

***At the suggestion of a friend I will keep two running posts to be updated randomly, this one, for educational resources, studies, etc and another of fellow bloggers and vloggers with EDS. Please let me know if any links are broken/nonfunctional!***

General Information:

Research:

Books for EDS and related conditions”

cartoon of muscle talking to tendons and joints with title "inside my body right now"

 

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.

Life Hacks: Spoonie College Edition

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      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)
    1. 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).
  1. 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. 
 
 
 

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!