“Ambulance Dollars – Feeding Tube Awareness Week” by Tyler Stagman

Today’s Tubie Guest Writer is Tyler Stagman:

 

“I was warned when I agreed to the gastric tube that many people would not know what it is or how it works. I was lucky enough the first few years I had it to have a place nearby where they knew how to care for the tube, including placing it and taking care of any problems or questions I had with it.

Now that I have moved, I have found that I constantly have to advocate for myself even more than I did before, because many of my doctors are not familiar with my disabilities or how my care needs to be more hands on than most people. Every time someone has to check my stomach, I show them where the tube is and tell them not to press on it or too close to it. Most people are accommodating, but others do not take the time to care.

I am constantly surprised how many medical professionals do not know what my gastric tube is let alone how it works. I was hospitalized recently, and during my stay I received antibiotics via feeding tube twice a day. I had to teach every nurse I had during my stay how to give my medications via gastric tube. Even though I was there to get better and be taken care of, I had to teach my care team how to care for me. Most of my nurses took it very gracefully and were willing to take the time to learn. I did have one nurse who became frustrated and wanted me to just do it myself. While I understood that it can be frustrating, I was also frustrated that while I could be getting some much needed rest between being poked, prodded, scanned, and questioned constantly about my health I had to take the time twice a day to explain how to administer a medication, something I could do easily in under a minute.

Since my diagnoses I have learned two very important things: You are your biggest advocate. Do not be afraid to advocate for yourself! You are not being rude, you are not being condescending, you are telling your care team how they can best care for you! Most people admire you for advocating for yourself and do not see it as rude. The second thing I have learned is that the best way to raise awareness for yourself and about your medical conditions is to educate others. Your doctor cannot help you if they don’t know what is going on or how to handle the problem! In the interest of education and raising awareness I have made a video demonstrating the basics about using a gastric tube.”

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[Image shows a lady to the left with short brown hair and straight bangs in a sweater, and a younger lady next to her with long brown hair in a purple-ish shirt with a brown over sweater, she is smiling and looking into the camera. They appear to be sitting at a table with white cups on the table and something that is red and white checkered.]
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Feeding Tube Awareness Week: What Tubies Wish You Knew

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[Image shows three spoons on a laptop keyboard. Overlaid is a clipart of torn white notebook paper with a red paper clip. On the paper in black text reads “Feeding Tube Awareness Week” with an image of a red heart with an outline of a feeding tube. In the bottom left hand corner is the logo for Thee Crohnie Grace Blog]

This week starts off Feeding Tube Awareness Week, but for me I spend the majority of my time educating and bringing awareness to such things. So I will be discussing only briefly what feeding tubes are and what they do and then I will be giving some quotes from other Tubies on what they wish people knew about feeding tubes!

So what are feeding tubes? They are an alternative way to receive nutrition when it would otherwise be very hard for someone to receive nutrition through oral intake. There are various reasons as to why people need feeding tubes. Some reasons include malnutrition from Crohn’s disease, GI paralysis from various illnesses, Gastroparesis, inability to swallow from various causes, MALS, and many other reasons.

There are many different types of feeding tubes: Naso-gastric, Naso-jejunal, G tube, GJ tube, J tube and so forth.

A Nasal tube is inserted through the nose and either goes into the stomach (gastric) or further into the digestive tract and into the small bowel or jejunum.

[Image on the left shows a white silhouette of a man with his head turned to the side but body facing forward, it shows a feeding tube as a dark blue line going down the nose and esophagus and into the stomach, then shows a lighter blue showing where the nasal jejunal tube would be placed. Image on the right shows a white feeding tube coiled up on a grey background with a red end.]

With a nasogastric tube people are often able to insert the tube themselves and remove it. With a nasojejunal tube  they are often placed by a radiologist since they must be guided into the small bowl under x-ray.

With other tubes like a G, GJ, or J tube, they are surgically placed and inserted straight into the stomach or jejunal.

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[Image shows a tan silhouette of a person with their head to the side showing a simple doodle of the stomach and intestines. It shows a direct G-Tube leading into the stomach.]

With a GJ the G tube has an extension tube that goes into the jejunal. And with a J tube, it goes just straight into the jejunal.

So What Do Other Tubies Want You to Know About Feeding Tubes?

  • “Your throat can kill you if you have a simple cold… feels like something is rubbing raw against a cut open skin when swallowing.”

“People stare at you in public.”

“When you get your tube  caught on something and you try to save it by falling or ruining something cause you’d rather not have to go to [the ER].”

“Waking up in a puddle of bile and formula…while you sleep and it disconnects.”

-Sydney Rohmann

  • “It’s okay to eat in front of me even when I can’t and to invite me to hang out even if it is food-centered. I hate feeling left out simply because they don’t want to hurt my feelings or “make me hungry.” -Elizabeth Schmidt 

 

  • “Just because someone has a feeding tube doesn’t mean they can’t eat some things orally. In fact some people (not all people) can still eat a little bit orally even though they have a feeding tube.”

“I also wish people would just ask when they have a question instead of just staring. We are still normal people. We just have a medical issue…”

-Riley Skapik

 

  • You can have a feeding tube and not be dying.
  • Anyone of any age can have a feeding tube.
  • They are not always comfortable. For some people they can be quite painful.
  • They are life saving devices.
  • It is not a scary thing.
  • It is possible to throw them up if you’re not careful. And it is not enjoyable.

 

I am a college student who has had an NJ tube over a year now, and before that had an NG tube for almost a year. Soon, hopefully, I will be getting my GJ tube placed since my nasal passages have been developing more scar tissue which can make placement harder. But I am grateful for my feeding tube helping me maintain my weight and help me stay nourished.

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[Image shows me in a blue and grey striped shirt with my hair pushed back by my glasses, my hand is resting on my face. I have my feeding tube hooked up. At the bottom in the middle is a red heart with a feeding tube outline and in white text in the heart says “I am a tube”.]

 

 

Making First Impressions: College and Disability

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[Image shows a sepia colored background of a wooden table with notebooks laying on it stacked on top of each other. Overlaid is a clip art of torn white notebook paper with a red paper clip with a pen in two different shades of red. In red text on the paper it reads, “Making First Impressions: College and Disability” and in the lower left hand corner is the logo for Thee Crohnie Grace Blog.]

Last Monday was the start of the new semester, due to errors with registration I was a class shorter than I had originally planned which made my schedule pretty light. I was hoping for an easy week, but for people like myself sometimes the first week is more stressful than even finals week.

The first week I always have to meet with the disabilities office to sign off and give a list of my professors, for they all will receive a letter about how I have various illnesses, various medical devices, and that they should try to be accommodating to those things.

Typically when teacher’s receive this, they tend to all think the same thing: sick girl who will miss class a lot, struggle, and expect the teacher to hold their hand and walk them through things. I’ve seen the way teacher’s have treated me in the past and I know that this tends to be the conclusion some harsher teacher’s will come to, while others will be extremely kind and accommodating or even the occasional “Yours story has inspired me.” or “You’re such a brave girl.”

I have discovered a way to combat this over the last few semesters though, and it basically comes down to trying to look and act as abled bodied as possible the first week, talk to the teachers before they get the disability office’s letter, and prove that I am ahead of the ball game by working twice as a hard as other students.

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[Image shows school supplies on a hard wood table. Sticky notes, a binder, notecards in a plastic container, notebooks, etc.]

So come Monday when I went to my first class (U.S. History) I had already got my books, notebooks, highlighters, pens (that you don’t have to push down hard to use), and had tried to make myself relatable to the Professor. I had heard about the professor from other people, I knew he was very down to earth, liked comics and geek-y things, and little did I know that I had actually met him at a convention before.

So I put on my Xavier’s Institute shirt and a nice cardigan and khakis and braced myself. Luckily once I had arrived and saw the Professor I remember that I had met him at a college comic convention in October of 2016. The class went smoothly and afterwards I did my usual routine.

“Hi, my name is Grace. I always like to let my professors know ahead of time that I have a handful of medical issues. I have Crohn’s and I have an ileostomy so sometimes I leave to take care of it, but it rarely causes issues. I also have Gastroparesis, basically my stomach doesn’t work, this is my NJ feeding tube, the pump sometimes beeps but it’s nothing to be alarmed about and I can take care of it. I also have Ehlers Danlos Syndrome,  my joints dislocate a lot, sometimes I use a wheelchair but on good days I can manage with a cane. And I have Postural Orthostatic Tachycardia Syndrome, so standing long can cause me some issues with dizziness and passing out.”

“And I sometimes miss class for doctor’s appointments but I try to schedule those around class if possible. Last semester I did miss a week for kidney stones, which also happened the semester before that, but hopefully this semester will be kidney stone free! But I just like to be upfront and honest and let people know so that if something arises it isn’t a surprise.”

Luckily since my Professor had met me previously and followed me on some social media he was already a bit informed about my health and conditions. It made it much easier and far less intimidating.

Luckily Monday I only have that one class. Tuesday I only had attended painting but had missed my very first anatomy and physiology lecture.

The previous art teacher had retired and was also my previous advisor. So when I made it up to the art room, I was anxious to meet the new professor and to see if they would be covering for the advisor position as well since I was changing my major to genetics.

The best part was that our new professor was not only a hilarious woman, but she too had previous interest in genetics and science before deciding to be a teacher. She had moved from Richmond, Virginia and was in fact taking over as advisor. I was so anxious about finding out that the college didn’t have the painting supplies for the class, and also that I needed to pick up my Anatomy and Physiology lab book that I forgot to talk to her before fleeing the class.

So she instead received an e-mail but she was extremely understanding. And I had to message my Anatomy professor and explain why I missed the first class (doctor’s appointment) and she seemed to be understanding as well though a bit more formal about it, so it was hard to tell tone.

Wednesday was Anatomy Lab and History again. It would also be the first time meeting with Anatomy professor who also was the professor for the lecture hall. The class seemed to go smoothly, there was a girl in the class who I had known from a few years back. My passion for science made the class go by quickly.

I went up and talked to the professor and was giving my routine speech when I noticed that my feeding tube was leaking formula not only on me but all over the floor… which made things a little bit more awkward considering it made for a poor first impression and left a lot of things out due to my panic of trying to fix my tube.

On top of that I noticed my ostomy had started leaking in history class but luckily it wasn’t until the end of class and I was able to get home and change it.

And Thursday was my final day of classes and first day of Anatomy and Physiology lecture hall. Seeing as how I had already met with the teacher I decided to just stay in the back and try to avoid people. I have discovered that when you are visibly sick in a class full of nursing students, people love to be nosey. Sometimes I don’t mind and will answer questions with no problem, but other times people would ask questions while the teacher was lecturing and then I was annoyed.

Luckily it has been a long weekend with plenty of time to study, make up notes, and keep ahead of the classes. Hopefully the rest of the semester will go by with minimal issues, for me and for everyone else out there. Being chronically ill is hard, and being a chronically ill college student is even harder, but I can do it.

And it’s thanks to biology and my biology professor last semester that I finally discovered what I’m passionate about and what I want to do with the rest of my life: Genetics 🙂

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[Image shows me in a white t shirt with a green alien and the shirt says “Don’t be sad, be rad.” and I’m wearing a mint green skirt with suspenders and have my backpack over my shoulder, glasses on, feeding tube, make up done, etc.]

 

 

A Late Review: Miracles From Heaven from the Eyes of a Still Sick Girl

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[Image shows three spoons laying on a laptop keyboard. Overlaid is torn white notebook paper with a red paper clip. In black text reads “A Late Review: Miracles from Heave from the Eyes of a Still Sick Girl”. In the left hand corner of the paper is a purple daisy with a green awareness ribbon. At the bottom left hand corner of the banner is the Thee Crohnie Grace logo]

I want to start by saying I have now watched this movie five times trying to find the exact words as to why I like and dislike this movie. And I wanted to find a way to portray those feelings in a way that does not discredit their story. Every review I read wants to talk about how cliche the movie is from a “christian-drama” stand point, but I’m not here to talk about this from a religious stand point. I’m here to talk about it from the view point of a girl who got sick around the same age as Anna Beam, and who is still sick, and will likely be sick all of my life. I want to talk about how it hits home, how it’s a good representation of motility disorders, and how whether you believe in miracles or not, you should never leave science out of the question and I will talk about how science and miracles go together.

I’m not here to tell you that God exists of that he doesn’t, I’m not here to tell you that miracles are real or fake. I’m here to tell you what it felt like to watch that movie and relive the things I have gone through, how happy it made me to see good representation of motility disorders, how upsetting it is knowing that the family did not donate any of their book or movie earnings to research for those who cannot fall into tree’s and become “cured”, and how it is important to credit the hard working doctors and medical teams out there who work so hard for people like myself to have the care and treatments we do, because ultimately prayer and God cannot fix everything, regardless of what people believe.

And with that, I’m starting up the movie for the 5th time. I first watched the movie with my friend Ari, who has total digestive tract paralysis and is on TPN (IV nutrition) through a central line. Like Ari, I too have Gastroparesis (a motility disorder similar but not the same as Anna’s), and receive nutrition via an NJ tube.

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[Image shows a computer screen with the movie, it shows the mother and father talking to a surgeon in green scrubs. On the side of my computer you can see Ari resting her head on her hand while watching the movie with me via Skype]

 

The movie starts with Christy Beam played by Jennifer Garner talking about miracles and what causes them. You then are introduced to the three daughters as they play with a tire. There’s some good humor that reminds me of my mom picking on me and my siblings when we don’t always match our clothes or do something silly.

They then go to church where they talk about faith with a very cheesy Pastor, have a barbecue and talk about going to an aquarium which seems to excite Anna Beam. Anna is clearly very caring of her family, talking about how she prays for her dad’s business to take off. It is that night that is becomes apparent that Anna is sick as she wakes in the middle of the night puking.

When I first got sick I was 8, I had severe stomach pain, throwing up, blood in stool, and there are still nights where I find myself hugging the toilet much like Anna.

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[Image shows Anna Beam in great pain, crying, as her mother is bent next to her with a hand on her head trying to comfort her]

Much like Anna’s mom, my own mom fought for me every step of the way. When doctors tried to give half-assed explanations for my pain and fever and sickness, she was fighting for answers. I look at Anna in the movie and see myself at 8 years old, sick and afraid, seeing doctor after doctor, spending lots of time in hospitals, test after test, medication after medication but with no real answers.

You see multiple doctors write off Anna’s condition calling it bacterial, viral, “lactose intolerant”, “acid reflux”. And many people with chronic illness can agree to having the same thing happen to them, not having doctors look into things or writing it off as something it wasn’t. It really captures the fact that diagnosis does not come easy and that some doctors can be complete jerks and have no bed side manner at all.

You see Christy Beam yelling at the arrogant male doctor saying she is not leaving til she knows what is wrong with her daughter.

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[Image shows Jennifer Garner playing Christy Beam very upset with her hand in front of her face.]

Finally we are brought to the scene where the doctors come in and tell her she is completely obstructed, that they need to put down an NG tube to drain her stomach and do surgery. The first time I had a feeding tube they put me under. But I remember a similar situation of being held down when I was 8 as nurses pinned me down to start an IV on me when I was still terrified of needles. Now I put down my own feeding tubes. Again it just shows a really raw moment, watching the scene the first time I found it hard not to tear up a little bit as I thought about my own past experiences.

Then we are shown Christy Beam and her husband talking to the doctor as he explains she has a motility disorder, which while they never specifically say it is Chronic Intestinal Psuedo Obstructions. And they talk about Anna doing tubal feedings. As someone who is tube fed, it was incredible to see tube feedings in a movie. I mean there are so many people who don’t know about NG/NJ tubes or mistake them for oxygen.

The doctor talks about how the food just sits there in her stomach because her intestines don’t work and so that’s why she keeps getting sick. There is no cure. So she is restricted to tube feedings until she can get a g-tube. They mention a doctor in Boston who is actually a real doctor, Dr. Nurko at Boston Children’s. The real Dr. Nurko actually has a cameo in the movie.

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[Image shows the real Dr. Nurko, a middle aged man with a receding hairline, glasses, in a nice jacket and tie next to Jennifer Garner in a white with blue striped shirts holding a teddy bear in scrubs.]

The next scenes include showing Anna with her nasal feeding tube, medicine chart, etc. Again I can’t express how amazing it was to see tube feedings in a movie. It then shows Christy pulling Anna’s feeding tube out way too slowly if you ask me. When I pull my feeding tubes I pull them two hands at a time as fast as I can.

It shows Anna not being able to wear jeans. And she asks, “Why do you think God hasn’t healed me?” I remember wondering the same thing at her age, wearing only sweat pants because everything else hurt.

From the stand point of someone with gastroparesis, another motility disorder, I want everyone to see this movie, just so they see the representation of the illness in the movie. The effect it has one family, on oneself, and even on one’s faith if you are religious.

I was very young when I first got sick, and so I don’t really remember everything and how it effected my mom. If she questioned her faith, if she felt as lost and scared as I did.

Next is the scene where Anna’s dad brings home a yorkie. Ironically after I got out of the hospital, I got a yorkie too, his name was Elliot. He would lay on my lap all day and keep me company when I was too sick to do anything. It made me chuckle just to see the ironic similarities between my story and hers in the movie (I haven’t read the book so I have no idea if it occurred in the book or not)

Now for the part that sent fire through my veins. The pastor says when things go wrong, you should look at yourself and see if you have gone astray. Some mother’s approach Anna’s mom and tell her that the reason her daughter is sick is because maybe she is sinning, or her husband, or Anna. This is when religion becomes toxic. I guarantee had someone approached my mom and said that, they would be eating their words through a feeding tube as well. And if someone came up to me today and told me it was my fault for not getting better because I was sinning, I would probably laugh. Being sick is nobody’s fault. It just happens. Offer support, don’t condemn.

Now I won’t spoil the whole movie, because I want you to go and watch it. I want you to see the movie and make your own conclusions.

You see the parents fight, which happens often when people get sick, you see them do various tests on Anna, you see Anna in the hospital. It is incredibly real and more accurate than any film I’ve seen about chronic illnesses.

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[Image shows Anna Beam laying in a hospital bed in green pajamas that have dogs on them.]

The scene that had me includes Anna in the hospital, she’s been there a while, after a horrible night of pain she turns to her mom and says she wants to die, she’s tired of being in pain, she just wants to go to heaven and be done with it.  She says, “I want to go home.” “Don’t you understand it never stops hurting?” “I just want it to be over.” I think that was probably the rawest moment of the film, because I can remember thinking the same things on my worst days. You can really see how Anna’s personality changes from being sick, something that many people can relate to. It is incredibly hard living with chronic pain, getting sick after eating, living in and out of hospitals, dealing with tests and needles and shoving tubes down your nose or ending up on TPN or with a surgically placed tube.  It is exhausting. We smile and put on strong faces, try to make sure people don’t have any reason to pity us or feel sorry. But that moment, that’s the reality of living with an incurable illness.

There are moments when I think how much easier it would be to give up. You see Anna get depressed. Her mother arguing with her to take a shower, my mother and I have had the same argument. She says, “What’s the point? I don’t want your help.” She’s reached her tipping point.

Of course in the movie and story Anna falls into a tree and is then told she is asymptomatic. She is not cured. She is either in remission, or as my friend Ari suggests, she was misdiagnosed and probably had MALS which would explain how falling could fix her symptoms since it is caused by compressed artery which could become uncompressed when she fell. Regardless, she no longer is experiencing symptoms.

In a similar sense, after you reach your tipping point, there comes a moment of bliss when you have reached acceptance of what is happening with your life. Once you are done grieving for the previous life you had and have accepted that this is how it’s going to be.

So I don’t want to say this is a bad movie. I wouldn’t have watched it 5 times if it was. I don’t agree with everything in it, but it shows the reality of living with a motility disorder. The portrayal of feeding tubes, central lines, hospitalization, grief, etc. It really hits home for me.

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[Image in the top left shows Anna getting an endoscopy done, the image to the right of that shows Anna getting her tube feeds through her nasal feeding tube as her mom checks her feeding pump. The second image on the left shows Anna with the yorkie terrier her father brought her. Below that is an image of Anna with her nasal feeding tube as her mom is about to pull the tape off her face to remove the feeding tube. The second image to right shows Anna in the hospital with a tube coming out of her chest.]

Please, please, learn about illnesses like CIPO and gastroparesis, donate to research and treatment, realize that this is how some people live and will live the rest of their lives, and some will lose their lives to this. Watch this movie and remember that this is people’s lives, and there is no cure. If you walk away from this movie with anything, let it be awareness. I can’t say that enough. I want people to walk away and not forget about these illnesses and their effect on people. Not everyone gets a happy ending, but awareness can make sure that it really is a good life.

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[Image shows the actresses playing Christy Beam and Anna Beam in an aquarium with their hands against the glass looking at the fish, their reflection in the glass.]

 

How to Interact with a Wheelchair User

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[Image shows three spoons on a laptop keyboard. Overlaid is torn white notebook paper with a red paper clip. On the paper in black text reads “How to Interact with a Wheelchair User” with a black wheelchair stick man symbol and below that in dark small red text “Thee Crohnie Grace”. In the lower left hand corner includes “Thee Crohnie Grace” blog banner.]

It can be both awkward for the person in the wheelchair and the abled bodied person the first time around. A lot of people don’t know how to act, what to say, what is appropriate and what is inappropriate. The purpose of today’s blog post is to go over basic etiquette on how to interact with someone who is using a wheelchair.

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[Image shows me in a burgundy sweatshirt and black shorts sitting in my wheelchair looking up at an angle, behind me is the living room fireplace and various pictures.]

First and foremost, not everyone who uses a wheelchair is paralyzed. There are many reasons for using a wheelchair: mobility disorders (EDS, Cerebral Palsy, Friedreich Ataxia), fatigue, chronic pain, difficulty standing for long periods of time due to things like Dysautonomia. So never assume that a person is faking or that they do not need their wheelchair simply because you have seen them stand or walk for short distances.

When you meet a person in a wheelchair, just say hi. Don’t insist on knowing why they are in a wheelchair. They do not owe you their entire life’s story. Focus on the person, not on the disability. People who use wheelchairs are people first. Shake their hand if you want.

If the person in the wheelchair is being accompanied by a caretaker, make sure you talk to the person, not their caretaker. Keep in mind that they are present, don’t infantilize them by leaving them out of the conversation or going over them and asking questions they could answer to their caretaker.

Consider accessibility when going places. If you are going out to a restaurant or to a movie, consider where it will be easiest for them to manage to access ramps. If it looks like they might be struggling to get up a ramp (since many ramps are still inaccessible) ask them if they would like help. Never assume they need help, and never try to help without asking. If they don’t accept your help, don’t stress over it, just move on.

On the topic of not trying to help without asking, do NOT touch their wheelchair, lean on their wheelchair, move their wheelchair. Their wheelchair is an extension of their body and is due the same personal space you would give any other person. You would not touch a stranger without permission, so do not touch their wheelchair.

[The image to the left is a selfie shot of over my shoulder, a complete stranger who I do not know their name or who they were is holding onto the hand of my wheelchair.]

The other day I had an instance of a complete stranger holding on to my wheelchair. This is not appropriate. Do not touch people’s wheelchair. That would be the equivalent of a complete stranger coming up and just holding someone’s arm. It’s extremely uncomfortable and just rude.

Another important thing to remember is if a person in a wheelchair has a service dog, do not touch their dog, they are working. This goes for all service animals, do not pet them or distract them from doing their job.

Don’t shy around phrases like “run along” or “going on a walk”. Most of the time we use those same phrases too. Don’t try to be funny and make jokes about using a wheelchair, unless you are a close friend and have been given the okay to joke around. I know many of my friends and I make jokes from time to time in regards to it.

Be respectful at all times, just treat people the way you want to be treated, don’t use a wheelchair accessible bathroom stall if you don’t need it, don’t park in disabled parking without a pass, etc.

Now for some quotes from other wheelchair users: 

“Do not touch and/or mess with my chair without asking. Don’t assume I can’t do things just cause I’m using a wheelchair.” -Nina Marie

“Don’t be afraid to get to my level in anyway. It [makes it] easier by not hurting my next and hugs are way better too.” –Breezy Nichols 

“Don’t assume I need your help, with anything. I will ask if I do.” –Angel Marie Wilson

“Don’t touch/interfere/block/joke about it. Realize that it’s a tool and not who I am. Don’t pity me or tell me you’re sorry for me. I’m not. Offer help, and if it’s politely refused, don’t apologize and just let it go. It’s not about you.” –Chris Shrewsbury

“Don’t talk to me like I can’t understand you because I’m in the chair.” –Mila Shelly

    Being in a wheelchair is not a death sentence. It can give people so much freedom and make life much easier. It is an aid. With my wheelchair I’m able to go to conventions, take photography, go to events and not hurt myself to have a good time. The only thing hard about being a wheelchair user is the way people act and perceive me for using a wheelchair, but by abiding by these simple rules and thinking before you act it can make everyday easier for both parties involved.

[Image to the left shows me in a black and pink dress with various cartoon drawings along the bottom, in a wheelchair. My hair is curled and I have a black cardigan on.    In the photo to the right it is me from yesterday in my wheelchair (not entirely visible minus a bit of a handle behind my shoulder. It is snowing and I am in a dark blue/black jacket with a blue choker on. My feeding tube visible in both photos as well as my thin framed glasses.]

Making Your Own Feeding Tube Backpack

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[Image shows a blue and grey backpack laying on the floor, to the left of it are a feeding bag and Infinity feeding pump, to the right is a pair of purple scissors and black thread. In the bottom left corner is the blog banner for “Thee Crohnie Grace”. In the center is a clipart of torn white notebook paper with a red paper clip. On the paper in black text reads “Making Your Own Feeding Tube Backpack” and has a picture of a small blue backpack and in small red text along the bottom of the paper reads “Thee Crohnie Grace”.]

I think every tubie knows that nothing smells as gross as the formula you put down your tube, and even worse, spilling that formula in your backpack and never being able to really get the smell out.  I’ve had the same small black feeding tube backpack for close to four years now, ever since I started with NG feeds. I’ve spilled formula in it, had bags leak, and even after washing it, I open the bag and the smell of spoiled dry formula still lingers.

On top of that I had the struggle last semester of having to take two separate backpacks to college, one for my feeds and one for books and college supply. So I finally decided it was time for a new backpack, one that could hold my formula and pump and also have room for books. I got extremely lucky at Walmart finding a backpack that had three compartments, one that fit my pump perfectly, the second could be used to hold my formula feeding bag and the third was large and roomy enough to fit books and other school essentials in.

And it was cute, which is always a perk. The only issue was that it zipped the opposite way of my tubing, and it needed a clip to hold the formula bag. Luckily with some basic hand sewing skills and scissors, I was able to transform it in to the perfect feeding tube backpack and here’s how:

First things first, you will need a clip to attach your feeding bag to! I was able to find mine at Walmart.

 [Image on the left shows a blue plastic clip sewn into black satin material. Image on the right shows black thread with a needle in the top of it and purple scissors out of focus.]

Using thread that matches the inside of the fabric just so it doesn’t stick out, sew in the clip you have. You will want to go over the same stitch a handful of times so that it is secure enough to hold up the full bag. The bags I get only hold 500ml at a time, I know some hold way more than that, so you will want to test it out after you sew it in to make sure it will hold up.

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[Image shows the inside of a backpack, a blue clip in the upper center and clipped to it a feeding bag filled with a blue liquid (blue gatorade)]

I filled mine up to test the clip weights, and once I felt the stitching was secure I moved on to the next step. Since I wanted to be able to fully zip up the backpack, I decided to put my own slots in the sides of the bag so that I could thread the tubing through the slots into the bottom compartment into the pump.

To do this I took my scissors and just cut a small hole big enough to fit the tubing through, right next to the zipper, and another small hold in the side of the front compartment to feed the tubing through into the pump and back out.

[Image on the left shows the blue and grey backpack from the side, next to the zipper is a cut which has been stitched up with black thread, a tube coming out from it. The image on the right shows the front compartment of the backpack, a hole also in the side of it with blue stitching and a tube coming in through the hold and connected to the pump laying on top of the backpack.]

After I cut the holes in the side, I noticed fraying in the fabric, so I used a simple stitch to go around the fabric and also used some fray glue that you can get in the sewing section to go along the edges and stop the fraying as to not lead to a bigger hole than necessary. I tried to match the thread color to the backpack, using blue on the front and black along the edge near the zipper.

And that’s really it! After that was done, I let the glue dry and then ran all the tubing through to hook myself up to the gatorade I poured into the bag.

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[Image shows a blue and grey backpack with black seams with zippers. It has a lot of decorative pins along the front. On the sides you can see the tubing coming out from the sides and the tube connector laying in front of the backpack]

You can customize your backpack as much as you’d like, I love enamel pins which I get on Etsy. But you can get iron on patches, pins from stores, etc. Anything you want to make your backpack feel more like yourself. After all, if you’re going to be attached to something 24/7 you are going to want it to be something you like to look at!

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[Image shows me standing with my hands laying across my stomach. I am carrying the aforementioned backpack on my shoulders, I am wearing a black dress with grey stripes with Pokemon on it.]

Holiday Update: Tilt Tables and Ports

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[Image shows three spoons on a laptop keyboard. Overlaid is clip art of white torn notebook paper with a red paper clip. On it in black texts reads “Holiday Update: Tilt Tables and Ports” and has a red heart rate line below and below that in reddish brown text reads “Thee Crohnie Grace”]

Since Summer I had been trying to get to this point, for many years I have had low blood pressure and tachycardia, only more recently had it become more of an issue with pre syncope (tunnel vision/near passing out). As many people know, getting a diagnosis takes a lot of effort. You cannot just call up your doctor and get an answer that same day.

In July, I had came in to my PCP (Primary Care Physician) and express my concerns. She took my blood pressure, did an EKG, and said, “Well it looks like it has to do with your orthostatic pressure. I will make you an appointment with a cardiologist, we will have to get an ultrasound of your heart and you will need to wear a halter monitor until you go and see him.”

It took a few weeks to set up the other tests, almost three weeks before my heart monitor arrived which I was supposed to wear for 2-3 weeks, and only finally at the end of August did I get an appointment with a cardiologist.

I wore the monitor, got the tests, everything showed that my heart looked good, but was definitely working overtime. Anytime I stood up my heart would go up to 150-190 and even on occasions reaching 200+ beats per minute. My cardiologist said that it looked like Postural Orthostatic Tachycardia syndrome but that he couldn’t diagnose that. He put me on Cardevilol (a betablocker to lower blood pressure/heart rate) and told me to come back in a month and see if that helped.

On such a low dose there was no noticeable changes, my heart rate was still high and I was still dizzy and sick when I stood up. After a month passed I went back, he decided to make an appointment with an electrophysiologist who could run more tests and diagnose POTS (Postural Orthostatic Tachycardia Syndrome) but he told me in the meantime I should stay on the beta blocker.

It was two-three months before I heard back with an appointment date for the electrophysiologist, this was in early November. He agreed that is definitely looked like POTS and would want to do a tilt table test to be positive. He told me to continue the beta blocker as well until then.

When I was in the hospital the day after Thanksgiving for kidney stones, they took me off the beta blocker because my blood pressure was 70/50 with a heart rate of 194 and they didn’t understand why I was put on one in the first place. Luckily after I was released from the hospital upon passing two kidney stones, dealing with hydronephrosis and sepsis, I finally got a call for the tilt table date: December 30th.

Finals ended, winter break started, things passed by quickly and before I knew it, December 30th finally came around. I was told to be there at 8:30am despite testing not taking place til 10:30am.

Two lovely nurses took me back to their waiting room where they would hook me up for IV fluids and take vitals and monitor me for two hours prior to testing.

[Image on the left shows me in a light blue gown with dark blue and maroon diamonds on the hospital gown, I have my hair pulled back into a black beanie, I have make-up and glasses on and my NJ tube taped to my face with two pieces of plastic tape. Image on the right shows my foot hanging off the bottom of the bed I have black, grey and white leggings on and socks. On the bed is orange IV3000 dressing and a flush along with a paper to mark vitals on.]

I informed the nurses I had a port and they began to look for RNs who could access it. The first RN came in and immediately began to suggest that if she couldn’t access my port she would have to try an IV, and reached out to grab my hand. I pulled my hand back. If a nurse comes in and starts suggesting alternatives, I think it shows she’s not confident in her abilities, which means she is already thinking she is going to miss. I didn’t appreciate the lack of confidence in herself and her talking to me like a child.

Her lack of confidence showed as she attempted to access my port and missed completely, sending me into a meltdown as I was already stressed and overwhelmed.

A second RN who seemed to know what she was doing came in and was far more confident in herself which made me feel a lot better. She reswabbed the area and tried, but she too missed and as she pushed the needle it made an audible popping noise. She thought that meant she had gotten it in, as typically when you place the needle properly in the port it makes a similar noise, but I could tell from the pain that she had not gotten it in the port either.

So finally they gave up and called in VAT and started an IV, which thanks to my chest still throbbing from the missed attempts at accessing my port, I didn’t even feel the IV stick.

They started fluids and we headed to the testing room to wait for the doctor.

I laid for probably 30 minutes because the doctor was late, I was still anxious and overwhelmed and now in pain as my chest was still hurting and my back as well from laying on the hard metal table, causing my blood pressure to be what most would consider normal.

Finally the doctor came in and I was raised upward, my heart rate went to 156 and my blood pressure went down a little but still was not at my normal due to my anxiety and pain.

For twenty minutes I stood and my heart rate stayed about the same within a few beats of 156. I didn’t pass out, just felt dizzy and a bit sick. So then they gave me nitroglycerin to lower my blood pressure and boy did it kick in quick.

Within seconds of putting it under my tongue it felt like someone just took my oxygen out from under me, my blood pressure dropped to 90/70 which is about my normal most of the time. And my heart rate jumped to 198. Still I didn’t pass out. I just slumped a little bit and felt exhausted and sick and dizzy.

The nurses were amazed I hadn’t passed out. After twenty more minutes my heart rate was still 190+ and they laid me back down. The doctor left without allowing me to ask any questions or even checking to make sure I was okay after the test. I began to get a bit emotional because I had been extremely overwhelmed and the heart rate also has a tendency to make me anxious or jittery when it gets that high.

The nurses took me back to the room I was in previously and pumped me with some fluids til I felt good enough to leave. They gave me a paper saying I needed to rest the rest of the day and to follow up with my electrophysiologist which was already scheduled for later this month.

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[Image shows me on the couch with a brown blanket covering me, there’s a red checkered blanket behind me. I’m not wearing my glasses.]

I slept the rest of the day. And planned on calling my doctor Monday to get my port checked out to make sure it wasn’t tilted or flipped as it has happened in the past when nurses miss the port.

The rest of the weekend went smoothly, I played games with friends for New Year’s, spent New Years Day at home resting because I had a cold. And then called the doctor Monday, but they were closed. So I called yesterday and they scheduled for me to go get my port x-rayed today.

We did that earlier today and are awaiting results because since I have my Entyvio infusion this weekend I need to know whether or not the port is accessible and if it’s not I will need to schedule with Cincinnati to get it fixed or replaced again.

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[Photo of me from earlier today wearing a black and white stripped dress with pokemon on it. My chest has a Phoenix tattoo in orange and gold, you can see my port scar. I’m wearing a blue tattoo choker and my glasses are pushed up on my head. My makeup is done and my NJ tube is taped to my face with clear IV 3000]

I haven’t updated in a while, but I plan on updating more. After I got out of the hospital with kidney stones I wasn’t able to take my mood medicine because the only syringe I had that fit my NJ tube connector broke and it put me in a bit of an emotional funk for a few weeks before I got it back in my system. But I’m still kicking. The new semester is upon me and I have more doctors appointments coming up. Hopefully this new year will bring lots of good things.

I should be getting a new rheumatologist locally and a referral to genetics, hopefully I will be getting a GJ tube and put my nose hose days behind me. Whatever the future holds I’m prepared to take it on. Happy New Year, I hope you all have a healthy and happy one!

XOXO

Thee Crohnie Grace