It’s 2020 Y’all

Wow it has been a hot minute since I posted, writers block merged to flare which merged to a new job which merged into the worst flare yet which brings us to the land of rehab and falling through cracks because you’re diagnosed with weird illnesses. One of the things that can be extraordinarily tricky to navigate when you have rare/non big name disorders is the fact that you often don’t fall into a particular category, track, or program that will help you when you need it.

While some of my conditions have established organizations, few to none are large enough or have enough resources to help patients directly to navigate the system and you’re unlikely to be flagged by a hospital or government organization as qualifying for certain services/help. For example, many people who go from ambulatory to full time wheelchair user are those with spinal cord injuries. Starting a few days after your injury you are connected with case managers, support groups, rehab options, durable medical equipment suppliers, OTs, PTs, ATPs, organizations, and more. There are programs dedicated to these types of injuries which experienced professionals, community-based supports, and even charitable organizations (which is fantastic!). Similar types of “tracks” can be found for traumatic brain injuries, MS, ALS, cerebral palsy, strokes, memory loss, amputation, and more.

Dos Equis Meme: "I don't always get sick but when I do, I get some shit no one has heard of"
“I don’t always get sick but when I do, I get some shit no one has heard of”

But what if you are facing similar types of situations/symptoms as the aforementioned but because of a rare disease? Who is there to guide you through that? Will you qualify for the same type of rehabilitation, supports, and guidance? How can you make the transition from your previous life of being sick but mainly independent to needing help, rehab, equipment, home modifications, or vehicle modifications? Where can you find information, resources, and options?

While I have used a wheelchair in college and for long distances/flares previously, it has been nearly 3 years since I have needed it more than a day. Prior to November 2019 I was working, rock climbing, walking and fairly independent. I wasn’t without significant health challenges but was fairly well managed. I was admitted in the beginning of November following a dystonic storm that sent me to the ER. Due to a variety of factors, I continued to decline in the hospital. By the time I was discharged I was unable to exert myself physically without going into full body dystonia, could not walk or stand for long unassisted, and took a major hit in the categories of coordination, balance, proprioception, and motor planning. Oh, and being in the hospital is just making it all worse so avoid that. Consensus was reached that I needed to be transferred to an inpatient physical rehabilitation program to retrain my body how to walk. Sounded like a good plan. Ha.

Immediately we were hit with barriers- many inpatient rehab centers require at least 3 hours of daily therapies, something my fragile little ecosystem definitely couldn’t handle. Additionally, it seemed uncertain whether the centers would be able to manage full blown dystonic storms or if they would send me right back to the hospital. Lastly, there was the issue of their ability to manage my medications, allergies, and reactions. So we tabled that thought and started trying to get me home with home health, PT, OT, and Speech. Sounded like a solid plan. Clearly we did not yet have 2020 vision. Ha.Ha.

So we spent a month or so getting creative at home with home PT. But we had to work with what we had, and all we really had was a gait belt and some therabands. We made calls looking for a day rehab programs that I would qualify for based on word of mouth suggestions, internet searches and home care recommendations. We essentially found nothing. And this was not because there was a lack of programs, but each program had an if and or but attached to it. So we pivoted yet again towards finding an outpatient PT center that would handle me. My previous PT is amazing but they were not a rehab center and lacked the equipment and staffing needed. Finally we stumbled upon a place that would see me, deal with complex patients and had some experience in the rehab world. The major downfall being that we would be constrained to the typical PT schedule: 1-3 times a week and 30-60 minute time periods but we are making it work. Thank god for the internet.

PT: check.
Now all that’s left is: figure out what is wrong with me, fix wheelchair, make 2 story house wheelchair accessible, stay out of the hospital, completely reorganize room, figure out transportation, schedule follow ups, find specialists, research, relearn how to walk, keep all my other conditions in check to avoid hospitals, try not to get the flu from these germballs walking around (PSA get your flu shot) and figure out what to do with my life now.

I would say in the past couple months I have interacted with over 50 medical professions, therapists, and service providers just to take care of the immediate needs. Doctors, NPs, pharmacists, nurses, PTs, OTs, ATPs, stairlift specialists, electricians, mobility specialists, DMEs, insurance, ramp builders, hospital bed suppliers, adapted driving/vehicle specialists, and more! It is complicated and exhausting and I consider myself to be a professional patient!

I can’t help but think about the barriers I faced and wonder how anyone manages to deal with all this. I have several benefits: good insurance, full command of the English language, a good medical knowledge, connections in the medical and rehab communities, internet access, communication skills, time management skills, organizational skills, financial assets, and many more attributes that have made this process easier for me that so many do not have. I have managed to fumble my way through the system and achieve a relatively decent outcome. Rare disease diagnosis should not translate to lack of support and options. These cracks in the system should not be so wide and so deep that the minute you step outside a few pre-drawn paths, you shit outta luck.

We need more advocates. We need broader reaching support for patients with complex and high need patients. We shouldn’t have to find all our own solutions, treatment options, and services. We need more help.

That’s all for now, hopefully I will come up with some post ideas and be posting more frequently. Feel free to comment or let me know if you have any ideas, I will be doing a post about accessible vehicles in the next couple weeks but after that I got nothing.

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



All I Can Eat App

WHERE HAS THIS BEEN ALL MY LIFE? This app, available for free (with bottom ads) on iOS and Google Play store and is an app designed to help people with food intolerances find foods without xyz or low in xyz. The categories are customizable and you can turn on/off intolerances at any time and the search parameters will adjust.

The app allows you to search for foods that contain the following: lactose, fructose, histamine, gluten, sorbitol, and salicyclic acid. There is a search function, you can look up foods by category, and even input your own custom foods or meals. This app is very exciting from a mast cell perspective as it can be difficult to find information on histamine levels in foods but can really be helpful for anyone with food allergies or intolerances or who are on specific diets.

Below are some screenshots of what the app looks like, and how it is laid out. I have not tested it for accessibility yet, but will update if I do. This post is not sponsored or affiliated in anyway, I was just thankful someone showed it to me!

Feeding Tube Resources

All the things (that I can think of) I wish I had when I got a tube. *work in progress*

Feeding Tube/Supplemental Nutrition focused Companies/Orgs

Oley FoundationOley is home to many a great resource from conferences to webinars to blogs from tube fed families, to equipment loans and donations!

Some quick go to resources from them are:
Tube Feeding Tips Page
Choosing the Right Tube
Parent/Patient Recommended Accessories
Equipment Exchange/Supply Store
Recorded Webinars

Gastroparesis Patient Association for Cures and Treatment(G-PACT)

Feeding Tube Awareness Foundation
Useful Products
Infinity Pump Manual for Friends and Family
Taping and Site Care

Complex Child: online monthly magazine written by parents of children with special needs which often features resources and stories about tube feeding.
Tube Feeding Information

Replacing a low profile G or J tube

Blogs/Vlogs by People with Feeding Tubes (or their parents)

The Tube Fed Wife

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.

Add a Smartphone to your holiday shopping list… for the seniors in your life

Okay, I know what you’re thinking. I’m crazy. I bet you tried to imagine your beloved senior texting, or even making a call and laughed. I was lucky enough to spend the summer around my grandpa, an 86 year old NASA physicist who helped put a man on the moon with the computing power of a basic calculator. In this time we upgraded him from a flip phone (which he never used when he had) to an iPhone 8. Why on earth did we embark on this learning journey with a man who had no desire to text, get addicted to Candy Crush, or even chat on the phone? Good question people of the internet. Turns out that 40 years working in wind tunnels without ear protection combined with age meant that my grandpa’s hearing just wasn’t cutting it and the hearing aids he had for the past two years weren’t either, it is a noisy world out there. So he went to his audiologist who recommended these next gen hearing aids that could be paired via bluetooth to a smartphone and adjusted  via an application. Pretty neat. 

Cue the learning process. As the family’s “tech” person, I spent my summer helping my grandpa learn to use his new hearing aids and smartphone and it has changed my perception on smartphones for older adults. Here are a few reasons you may want to consider switching your loved one to a smartphone.

Hearing Problems or Hearing Aid Use

Example of hearing aid and control application
  • Hearing Aid compatible smartphones: Many commercial hearing aids are now Bluetooth compatible. This means that once initially paired, the aids can be controlled (volume, directionality, power) via an application (hearing aid specific) on the smartphone. Additionally, settings can be adjusted so that their phone notifications (ringer, texts, etc) will ring in their hearing aids. For a list of iPhone compatible hearing aids click here. For general phone compatibility click here
  • Live Listen (Apple): This feature uses your iPhone’s mic to focus conversations in loud environments and stream this audio directly to hearing aids. This is a game changer for 1:1 conversations in public places and is compatible with several commercial hearing aids and is now compatible with air pods (wireless Apple headphones).
  • Sound Detectors (Samsung): This feature can be enabled and allows the phone to listen for doorbell sounds and crying babies (second one might want to leave off) and sends an alert to the user if that sound is detected.
  • Flashing Notifications: This allows users to have either the camera flash (iPhone) or the notification light (Android) flash for notifications (calls, texts, etc).

Vision

Magnifier App in iPhone
  • Dynamic Text/ Font Changes: These settings on various devices allow the user to make text larger in apps and on the web for those who have trouble with small type.
  • Magnifier (Apple)/ Magnifier Window (Samsung): This can be added to the control panel and uses the phone’s camera to magnify anything, newspaper, photo, or prescription bottle! In the app you can enable the flash to brighten the view, as well as invert colors/adjust contrast for easier viewing. On screen items can also be zoomed in for higher detail.
  • High Contrast Keyboard/Fonts (Samsung): These settings allow for high contrast keyboards and fonts which help for identification and reading

Dexterity Issues

Assistive Touch Menu on iPhone
  • Assistant Menu (Samsung)/ Assistive Touch (Apple): These menus help those who are new to touchscreen use and “gesture” control or have trouble with dexterity. These menus float on screen and allow complete control over the phone and functions just with single finger tapping.
  • Touch Accommodations (Apple): These are settings that can be enabled to ignore repeated accidental touches, or set the phone to register only the final position of a touch on screen as deliberate (i.e. if they touch and drag their finger it only selects what they end on). 
  • Siri and Google Assistant: No need to touch the screen, phones and function can be controlled with their voice!

Applications for Seniors

One of the many benefits of smartphones is access to the respective application stores. There is an app for just about anything and this does not exclude seniors both for fun and safety! Here are some of the types of apps that may be good to add to your loved one’s new phone. 

  • Medication Reminder Apps: Not only does this allow them to have a place with their up to date list of their medications but can delivery automatic reminders for them to take their medication, what it is, how many and even what it looks like! Many of the apps have cloud capabilities so that caregivers can check use and update remotely.
  • Panic buttons: Apps like this function similar to a fall alert button but have an app that will send location information to emergency contacts with the press of a button. Some are compatible with Siri and other voice commands.
  • ICE Medical Information: These applications (built in on some phones) allow the user to input critical medical information, emergency contacts, allergies, medications and other first responder information and can be accessed without needing to unlock the phone.
  • Video chat (FaceTime, Skype, Hangouts): Allow for long-distance relationships, sharing, and help finding those darn keys around the apartment.

If all of the above are not enough reason to reconsider getting granny an iPhone, also take into consideration learning new things can be exciting and help keep their faculties sharp. Sure, there is a learning curve and my grandpa has surely surprised me with his progress, but in my opinion it is worth it! My grandma even mastered emojis!

August is Digestive Tract Paralysis (DTP) Awareness Month

Digestive Tract Paralysis (DTP) refers to a group of conditions that affect the motility, or speed in which your body digests food and liquids, such as gastroparesis (GP), chronic intestinal pseudo obstruction (CIPO), and colonic inertia (CI). I have been diagnosed with esophageal dysmotility, gastroparesis, and colonic inertia and all have greatly effected my health and lifestyle.

Gastroparesis, or paralyzed stomach, is a condition where your stomach takes too long to digest and empty your stomach. GP can be primary, secondary, or idiopathic and can range from mild to severe (little to no motility). Common forms of secondary GP are diabetic GP, Post-abdominal surgery GP, post-viral GP, and GP from eating disorders. Some symptoms of GP according to GPACT are:

Early Satiety after a few bites of food

Nausea (especially after eating)

Vomiting (often undigested food from hours or even days before)

Abdominal Pain

Hiccupping

Excessive Belching

Bloating

Weight Gain

Weight Loss

Loss of Appetite

Malnutrition

Dehydration

Heartburn or gastroesophageal reflux which is not controlled by acid suppressants

Erratic blood glucose levels

Comic of stomach and intestine by the awkward yeti

 

For me, dysmotility has hijacked my love of food and made me realize how much our culture revolves around food. Out to dinner, snacks at the movies, family meals, holidays, snacking, period chocolate eating, late night iHOP runs, and lunch breaks at work. When you can’t eat or can only eat a few types of food in small amounts, you miss out on a lot. Not to mention if certain food smells make you nauseous- my DTP friends can probably relate to being nauseous and starving at the same time. Food is everywhere. DTP is part of the reason I have a feeding tube which givesme freedom but is also a pain. in. the. ass. I have to be fed into my intestine to bypass my damaged stomach (intestines are more functioning though also damaged). This requires being attached to a tube and pump anywhere from 12 to 24 hours a day.

But DTP doesn’t just effect eating, it effects medication absorption, acidity levels, bowel control, hydration, energy levels, weight, and definitely clothing sizes (bloating is no joke). We need a cure, we are starving for a cure. While there are some treatments available they often come with difficult side effects or are invasive. More research needs to be done for a cure to be found! To donate or find out more please visit the Gastroparesis Patient Association for Cures and Treatments (G-PACT)!

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