College With a Disability

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[Header shows three spoons on a laptop keyboard with clipart of torn white notebook paper with a red paperclip. On the paper reads “College  With a Disability” and a red symbol of a stick man in a wheelchair. In the bottom left corner is Thee Crohnie Grace blog logo]

College can be hard enough on the average person. It is a strenuous full time job of writing papers, studying, reading the material, re-reading the material, studying some more, and praying that you pass the midterm tests.

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[Image shows notes featuring details about the skeletal system. There’s a blue gel pen and a set of highlighters on top of the paper.]

For people with disabilities or illness, this can be especially hard. Previously on here I discussed the issue of accessibility in college. I discussed how some lecture classes were nothing but stairs, how some class rooms were so cluttered you couldn’t fit through, etc. This semester has made it apparent that there is still more to discuss: absenteeism, testing, pain management and fatigue management while at college.

It is important that regardless of severity of your illness or disability that you know help is offered, though some colleges are more accommodating than others.  Some colleges allow extra test time, or taking the test at a different time alone to make it more accessible, while some colleges have better things to offer such as text-to-speech options, transportation from classes (at larger colleges), and in some cases omitting the 3-absentee rule.

This is why it is important to talk to the disabilities office at your college to see what types of accommodations can be made for you. Of course some will require notes from doctors and proof of diagnosis before you get accommodations, but in some cases simply talking to your advisor or talking to the disabilities office about your concerns for the semester can help them find a way to help you out.

In my case, I have preferential seating (even though in college there’s very rarely assigned seating), but after I had an issue with one professor assigning seats and trying to put me in the top row (of stairs), we talked with disabilities and got it all sorted out. I can take my lab practicals by myself while the teacher switches out the slides for me, because after the first practical we discovered that her testing style was not very accessible. You had to move around the class room, you only had a minute to answer 3 questions per slide, and people were not pushing in their chairs, which makes it a bit hard with a mobility device.

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[Image shows me standing with my walker, I’m wearing jeans and a white t-shirt with sign language spelling out “Bruh” and carrying my backpack over my shoulder hooked up to my feeding tube.]

Some professors can be really accommodating on their own if you talk to them. For the changing of lab practical style for me, I didn’t even have to go through the disabilities office. I simply messaged the professor and explained how it was difficult with up and down movement due to my POTS and that without people pushing in their seats I couldn’t maneuver around to the stations easily.

But the biggest issue is attendance at college, most colleges have a rule that after 3 missed classes, they can simply fail you. While some professors are lenient on this policy, others will dock your grade a letter for every time you miss.  Talk to your professors and the disability office. Sometimes they can make accommodations so that absenteeism isn’t held against you.

Being in college all week can be hard when you also have doctors’ appointments throughout the week almost every week, not to mention surgeries, unplanned ER trips, and not to mention just being too exhausted or in too much pain to make it to class some days.

I think colleges tend to forget this. It is hard to keep up with everything and also keep up with all the college work. I am only taking 4 classes this semester but am still struggling because I also had to have surgery, deal with pain and exhaustion, brain fog from medication, etc.

And then some colleges decide the best way to deal with people struggling in college is to guilt trip them. My college sent out emails to students saying their grades reflected on them, their family, their significant others and could negatively impact the rest of their lives.

This is not the way you deal with students when 1 in 2 Americans now have a chronic condition of some kind whether it be something like Asthma or something more severe like Cystic Fibrosis. Regardless of severity, there is an increase in chronic illnesses and diseases, which means an increase in disability. Which is expected to only increase as the years go on.

With this in mind, you think schools would be more equipped to handle the students out of nearly 133 million people struggling. And while some people can manage their illnesses and have zero interference with college, many struggle with controlling symptoms and side effects of their illnesses.

Perhaps this stems from the fact that the majority of illnesses are invisible illnesses.

“Notably, 26 million persons were considered to have a severe disability; yet, only 7 million persons used a visible device for mobility. Thus, 19 million of the people who were defined as severely disabled, did not use a wheelchair, cane, crutches or walkers. In other words, 73% of Americans with severe disabilities do not use such devices. Therefore, a disability cannot be determined solely on whether or not a person uses visible assistive equipment.” -National Invisible Chronic Illness Awareness Week

So with the facts, why are colleges still lacking a lot of accommodations? I have been thankful that my college has worked so well with me, but I know others who attend my college and have disabilities or illnesses who receive limited to no accommodations or support from professors. I think it’s important to talk about these things in order to see a change.

With statistics showing that chronic illnesses are on the rise and will continue to rise, it’s important for the world to take the steps to make sure everyone has a chance to receive education.

Is your college accommodating to your illness/disability? If not, what would you like to see be changed?

To quote Malala Yousafzai, “Let us remember: One book, one pen, one child, and one teacher can change the world.”

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[Image shows the edge of a laptop and the top of a notebook with a handful of tabs reading things like “Intro”,  “Ch. 2”, “Lang.”, and various other tabs.]

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”.]

 

 

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.]

 

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.]

Project: College Support Group

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[Image shows three spoons on a laptop background. Overlaid is a clipart of torn white notebook paper with a red paperclip. On the paper in black text reads “Project: College Support Group”. Below is a white clipart of an awareness ribbon and below that is small red text is the URL for Thee Crohnie Grace Blog]

I remember being in the hospital on my 18th birthday, in the hallway outside my room there was a poster pinned to the wall. It talked about a support group for people with IBD, they were going bowling that weekend.

I remember thinking how cool it must be to live in an area that had something like that for their teens and young adults. Living in my town, you may have one or two students here or there with IBD, but not really enough for the basis of a support group.

Over the last month of so I had discovered two girls who I had gone to school with and one I had played soccer with had been diagnosed with mild gastroparesis. It then occurred to me that while there may not be a plethora of people with one specific illness, that my town was actually filled with people with various chronic illnesses and mental illnesses. Which makes sensing knowing that 1 in 2 adults will be diagnosed with at least one chronic condition now.

I thought to myself how fantastic it would be to have a group at the college where people of all health conditions could come together to receive support, to raise awareness, and to do fundraisers and stuff for charity. At the time it seemed like a distant idea. But then one night at 1am, I decided I was going to make that a reality.

I emailed our student services and disabilities advisor and told him about this idea I had. In the meantime I began to look for students, whether they had depression, anxiety, gastroparesis, or even a few students in our area with other illnesses, such as Friedreich’s Ataxia.

I figured with the number of students I knew, and probably the hundreds of students I didn’t know, that made a solid base for a college support group club. image1-8

[Image shows a geometric background with shades of yellow, green, and blue. There is a white banner with the gold WV logo and then blue text that reads “Parkersburg West Virginia University” and white text below the banner that reads “Support Group”.]

To be completely honest I wasn’t really sure where to start, I initially created a Twitter in hopes of finding more students who would be interested in such a thing, while also creating a Facebook group for organization and planning.

Luckily on Wednesday, the college SGA held a meeting about clubs. They held the meeting to discover which clubs were active and which were inactive. Despite not being an official club yet, I went anyway and signed in, and actually learned a good bit about how clubs are formed and ran.

That night I scheduled a meeting with the advisor, I began writing a constitution and by laws that are necessary. I filled out the application for the club that has to be approved. And I put together sample brochures/posters with all the information about what the club would do.

[Image on the left shows two stacks of paper on a table. On the top is the brochure which says “WVUP Support Group” and then contains various photos and information at the bottom. The other stack of paper says “Constitution and By Laws”. The image to the right shows me holding a binder and in the front of the binder shows the same brochure page from the photo to the left.]

I then needed to find officers to fill the necessary positions to start a club: President, Vice President, Secretary and Treasurer. I ended up finding three extremely passionate people to work along side me to make this club everything I hope and dream about.

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[Image shows a girl with blonde hair pulled back and glasses in a purple shirt next to a man with brown hair and glasses and a purple shirt. They are holding a poster that says “You don’t have to walk to be beautiful” and then a orange banner over the photo that reads “We can #StopSuicide”]

Meet Alexis Jackson, our Vice President, who has struggled with depression and anxiety for a long time. She spends a lot of her free time raising awareness for suicide prevention and is also a member of #Anna’sArmy, a group started locally to help raise awareness of Friedreich’s Ataxia. She is dedicated to helping others and I am glad to have her on our team!

Next, our Secretary!

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[Image shows a girl with long brown hair sitting cross legged on the grass, she is wearing a white shirt with orange text that says “And So I Kept On Living”, she is holding a piece of paper that reads “I Kept Living Because I am a WARRIOR and I refuse to let my depression take victory over my LIFE!”]

Kyleigh Hawes is our Secretary, and rightly so as she is a journalism major at WVUP, and has interviewed me already about the support group. On top of being our Secretary, she is also a feminist and suicide awareness activist, she has stated that this cause is near and dear to her heart, which is huge. She has such a kind heart and I’m glad to have her on our team!

And lastly, we have our Treasurer…

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[Image shows a guy with short brown hair in a yellow and black tartan shirt sitting at a piano in a room.]

Dustin Digman is another student at WVUP and also our Treasurer now. He too struggles with depression and anxiety and is a close friend of our VP, Lexi. He has a tattoo of a water color semi colon which tells a bit of his story and part of Project Semicolon. “A semicolon s used when an author could’ve chosen to end their sentence but chose not to. The author is you and the sentence is your life.” He is a very genuine guy, and I’m glad to have him on our team!

And of course there is me, I am the President. I’ve been a long time activist for Disability Rights and raising awareness of chronic illnesses. I have Crohn’s, an ileostomy, Gastroparesis, an NJ tube, Ehlers Danlos Syndrome and am a mobility device user, as well as I have OCPD and probably POTS.

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[Image shows me in front of the college by the banner that says “Welcome to WVU Parkersburg”. I’m wearing my glasses and a floral sweatshirt, carrying my cane.]

With this incredible team we have already put together plans, our first organizational meetings will be next week, to work on an official meet day and to talk about the projects we already have planned.

Lexi has already found a few things for us to do, starting with next Saturday an “Out of the Darkness Walk” to promote awareness for suicide prevention, we are also working with her boyfriend who is a member of the Gaming Club on a joint fundraiser such as a Charity Gaming Fundraiser that are often seen on Twitch, and then on October 12th at WVUP there is a blood drive taking place in which we will be giving away cookies to people who donate blood.

On top of this, with the help of my graphic designing friend, Mike Mort (who runs his own online shop, as well as blogs and works with Make-A-Wish) we have created a logo for the club which will also be used for our club t-shirts once we get the funds!

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[Image shows a black girl stick figure in a manual wheelchair in a blue shirt and khaki pants, then a boy with pale skin and red hair in a grey hoodie and jeans using a cane, next is a girl in a yellow shirt and pink jeans with brown hair and an olive skin tone holding a book and has a feeding tube, then a black boy with  a green and white shirt and black pants with white sports stripes and has self harm scars on his arm, lastly we have a olive/tan skinned stick figure with brown hair and a yellow polo shirt and jeans in an electric wheelchair. In blue text bellow it reads “WVUP Support Group”]

Using the logo we have designed t-shirts for when we start doing fundraisers so people know who they can come to with questions or concerns, like uniforms but much more casual and comfortable.

Overall I think this is going to be a positive impact on the college and community and hopefully will help the students and create a sense of support and community amongst those with with chronic/mental illnesses or disabilities.

It makes me so happy to see my small vision become a reality with the help of friends and faculty members.

 

Follow us on twitter @WSpoonies 🙂

 

Grace vs. the NJ Tube

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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 reads in black text “Grace vs. the NJ Tube” with a green awareness ribbon below it. At the bottom of the banner is the URL for theecrohniegrace blog.]

Upon losing my NJ tube when it got pulled snorkeling, I’ve been waiting to get it replaced. Which finally got done this Monday. I was told to be there at 7:45 am… of course I didn’t end up getting out of there until after 1pm.

After weeks without my tube, and being extremely moody and emotional, while I normally would have been calm and collected. I was a bit of an emotional mess yesterday. I don’t know why I was so anxious, since I’ve dropped tons of tubes in the past, but yesterday was different. I was terrified for the first time in a while.

We got there and I started freezing up, as I often do when overwhelmed or anxious. My mom finally was the one to tell the nurse that I was extremely anxious and it might help to give me something for my nerves. I think it took them a back a little bit, because they had never seen this version of me, the last time they saw me I was smiling and joking, dropped my own tube, and was out of there in time for college.

Even when the radiologist came in he was like, “I’ve never seen her like this.” Admittedly, he’s only seen me once, but I had impressed them the last time, and instead I was like a small terrified child this time. The last couple weeks have taken their toll on me.

Luckily, they didn’t argue, they just wanted me to be comfortable and they were genuinely concerned about me being so upset. So they brought in a nurse to access my port and give me a bit of Versed to make it easier for me. I was a bit disappointed in myself for not being as “brave” as I’ve been in the past, but as my mom and the nurses reminded me, you can’t be strong all the time and they couldn’t blame me for being nervous.

So the nurse started to feel around for my port, I mentioned to him the struggle I had last time with a nurse who missed my port but held me down while she dug for it still, and so I was anxious about that too. He felt around, said he would try once, if he missed it, he would just try to do an IV cause he said he was really good at those.

So as I put on some music and squeezed my mom’s hand, he cleaned my chest and stuck my port. He then informed me that my port was angled and turned a bit, so he had to go in at an angle as well, and that it was deeper than most. But nevertheless he got it, it pulled back blood fine and flushed fine.

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[Image shows me with a blanket around my shoulders, not wearing my glasses, my face is a bit red and puffy from crying, I’m wearing a purple shirt and the IV tubing from my port is hanging out of my shirt.]

Soon the other nurse came in and pushed some Versed before they brought me in the tube. The tube was different than the last one, a bit thicker and with a heavy metal weight that was not very bendy on it. I was a bit nervous still, and it wasn’t until they took me back to their OR room that I was finally able to get it past my nasal cavity. As I was sipping water though trying to get it down my throat I started to choke. I threw up the water and pulled the tube out.

They then gave me a bit of Fentanyl and sent me back to the waiting area, they said they would come back and try again in a bit. So we sat waiting a bit.

Finally they took me back again. They pushed more medicine. Everything after that started to become very blurry, as Versed is known for causing a bit of loss of memory.

They laid me back on the table and the radiologist started coating the tube in some gel and approached me as if he was going to try to put the tube down. This freaked me out, because I’ve never had anyone else drop a tube on me while awake, I’ve always dropped my own tube.

So I asked to sit up and do it myself. They obliged. I sat up and quickly pushed it past my nose but then my nose started bleeding.

I remember asking, “That’s not supposed to happen is it?” Before blacking out. I woke up long enough for the radiologist to say, “The tube is placed, do you want to see?” And he showed me the X-ray. Then I remember waking up in the waiting room again as they taped it in place.

Turns out they had to get a different tube, and used the same tube as last time because they couldn’t get the new tube to advance, which is probably what caused the bleeding, I’m not really sure. I was still too out of it to ask.

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[Image shows me, with my feeding tube placed and double taped with white cloth tape. I’m pulling down my shirt a bit to show where the port was accessed.]

They soon came in and told me as soon as I was awake and ready I could leave. I was a bit wobbly when standing so I was given a wheelchair to get to the bathroom and also to leave. When I got back to the room they deaccessed my port and took off all the heart monitors that were on me.

[Image on the left shows me sitting in a wheelchair from the chest up, my port deaccessed and taped, feeding tube secured with lots of tape, and I’m wearing my glasses. Image on the right shows my abdomen area as my mom pulls off the sticky stuff from the heart monitors.]

With that I was free to go home. I got home and slept from probably 2pm to 6pm, still wearing off all the medication they had given me at the hospital.

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[Image shows me curled up on the couch, no blanket, sleeping in sweatpants and my purple shirt.]

I started my feeds back up today at 30ml/hr, I plan to increase by 5ml as tolerated. It’s not much but it’s a start. I also sent a message to my doctor about my port being tilted and why that might be and if that is normal, since it makes access complicated which is the opposite of what it is supposed to do. But it’s over with for now, and it’s a new day. Just a reminder that the anxiety doesn’t last forever.  It reminds me of the quote from Kimmy Schmidt: “I learned a long time ago that a person can stand just about anything for 10 seconds, then you just start on a new 10 seconds. All you’ve got to do is take it 10 seconds at a time.”

   Just gotta count to ten and start again. 🙂

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[Image shows me in the car, my glasses are pushed up on my head, I’m in a blue dress, my makeup is all done, feeding tube being held on with my clear IV3000 tape.]

“How Can You Rate Your Pain on a Scale of 0 to 10, if You Don’t Remember What Zero Feels Like?”

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[Image shows three spoons laying on a laptop keyboard. Overlaid is a clip art of a piece of torn notebook paper with a red paper clip. On the paper is a clipart purple awareness ribbon and a quote that reads “How Can You Rate Your Pain on a Scale of 0 to 10 if You Don’t Remember What 0 Feels Like”.]

When you are in a hospital they often come in and ask you, “How would you rate your pain on a scale of 0 to 10?” and if you are used to chronic pain, you know the struggle.

Depends on where.. and the time.. and what you were doing. My knees may be a 5, my stomach may be a 4, my head might be only a one or two. But I am constantly in pain. Not enough that I will demand pain meds. Unless my pain has me in tears, I often will take something light or just deal with it. So when they come in and ask me “Are you in any pain?” I tend to take that to mean, “Are you in any pain that you aren’t used to.”

And of course my pain scale is different from most. The pain scale they use at most hospitals start at 0 with no pain, then 1-3 with mild pain, 4-6 with moderate to severe pain, 7-9 with very severe and then 10 with worst pain possible. Living with chronic pain though has dulled my senses a bit to pain. Hence why I can sit and get a tattoo, or tolerate most pain without a whimper until a 8-10.

Most of the time my pain is mild to moderate. I live at a constant 3-5. Mild being that the pain is nagging or throbbing but I can push through and do what I need to or want to do with help. My cane provides relief from my knees that would push that 5 to a 6 or 7. Other times the pain becomes more moderate and interferes significantly with my day to day activities and hobbies. I can still push through, but if I do I will regret it.

When my pain reaches a 7, it becomes disabling to me, I need to sit down, I might curl up in a ball. Anything higher than that and I may not be able to verbally respond or I may become hysterical from the pain depending on the type of pain.

But what is my 1-10 scale, would likely be a 1-14 pain scale for someone who doesn’t deal with pain on a regular basis. What is my 10 might be a 14 for someone else. I could be experiencing a 9 on my pain scale, and still be conscious and able to respond. I walked around with a dislocated hip for a week before going to a rheumatologist and getting it fixed. He was surprised I hadn’t been unable to walk or in a great amount of pain, but due to my high pain tolerance, I had no idea until he mentioned it and then I was like, “Oh yeah, that has been hurting.”

The other thing is that with multiple chronic illnesses, my pain is wide spread. So as I mentioned before I could have different levels of pain at different locations. I once read a thing about how chronic illnesses are like a house being on fire. You often focus on the biggest fire or the the most troubling fire and forget about the smaller fires. So I often forget about some of the pain when other pains arrive. When I got kidney stones that pain took over and I forgot all about the other pain, or when I woke up from my port surgery with no pain control, but on a regular basis I juggle between joint pains, stomach pains, sore throat, and gut pain.

This is why it is hard sometimes when doctors walk in and want to know where my pain is. Unless they want a 600 word explanation, it is much easier just to say “I’m fine.” if I can tolerate it.