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

 

Thanksgiving Break & Health Updates

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[Image shows three spoons on a laptop in the background. Overlaid is a white torn notebook paper with a red paper clip. Overlaid is black text that reads “Thanksgiving Break and Health Updates” below is a burnt orange leaf and in red text “Thee Crohnie Grace”]

College has been keeping me very busy. Between writing and giving speeches for Communications, constant studying to keep up in Biology, art projects on top of art projects, and math (which speaks for itself). While I have been busy, it has introduced to me to a new passion, which is ironically genetics. Ever since I was into X-Men I was interested in genetics. My 5th grade science project was on mutations and punnet squares.

Now in college bio, I have gotten to explore it even more, doing DNA sequencing, making mutations, doing genotypes and phenotypes. It has been so much fun.

Luckily though I have gotten to take an early break, since I had to go to Cincinnati on Thursday for an MRI and an appointment on Friday I got to start my Thanksgiving Break sooner than later. Which has been greatly needed.

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[Image shows 3 photos, the first is of my lower leg covered in bruises. The upper right is me reaching up my back with my hand and subluxing my shoulder, and the lower right is my ankle and foot in the tub at a funky angle.]

Over the last couple months I have been dealing with anemia, throat pain, and just in general being in pain and exhausted. I had a throat ultrasound done to check my thyroid which revealed nothing. Had a gallbladder ultrasound which also revealed nothing. So I kept going about my normal routine, adding more tylenol to the mix of meds to deal with the added pain with no answers.

[Image on the left shows me with day old makeup and messy hair in a striped sweater and white tank top, I’m holding as many of my meds in my hand as I can fit. Image on the right shows me with my opalite choker, messy hair with glasses, feeding tube hooked up, and port accessed wearing the same clothes as in the previous photo.]

I got my second round of Entyvio with home health. My doctors had decided to move the infusions up to every 4 weeks, which was fine because I had friends there to keep me company and watch The Little Prince with me. Raynette (my home nurse) took some labwork when it was all done to check some liver enzymes and my sed rate to see if the Entyvio was doing it’s job.

Before I left for Cinci I got those lab results back, I was still anemic, my sed rate was within good levels, but it appeared my ALT was high, which is a liver enzyme.

So Thursday at 9am we took off so we could get to Cinci in time for my MRI at 2.

[Image on the left shows me in the car, hair pulled back into a green beanie, glasses, I have mint green headphones in, feeding tube, opalite necklace, and a t-shirt with a large black sweater over it. Image on the right shows Cinci Children’s from the parking lot.]

We got there a bit early and signed it. The original plan was for me to pull my NJ tube, put down an NG tube for barium contrast dye and then remove the NG tube and replace the NJ tube the next day after my doctor’s appointments.

One of the nurse’s working, Gail, was super excited by the fact I could put down my own tubes, and called me her perfect patient. She said I was her birthday gift because it was her birthday. She was really sweet.

I told them I had a port, so they didn’t need to start an IV, but since they only had one medicine to push for the MRI they didn’t want to access my Port. So while they got other stuff ready, Gail tried to start an IV but didn’t get it. She told me she wasn’t going to make a pin cushion out of me and called the VAT team to bring in an ultrasound to find a vein, and said if VAT couldn’t get a vein then they would use my port, but luckily VAT was able to find a good vein deep in my arm and despite IVs being way more painful than getting a Port accessed, she managed to get it.

And with that, Gail brought me some good news. She said that since I had given her a gift for her birthday that she had a gift for me, they wouldn’t be pulling my NJ tube. Since they were also using IV contrast, she said it wouldn’t be necessary to pull the NJ tube because they would still be able to get good photos. And that the small metal weight wouldn’t present a problem.

So with that they brought in the nasty sad-flavored barium contrast and my mom helped me push it down my tube because the big syringe was hard to push.

After about 40 minutes of pushing barium and constantly running to the bathroom because that stuff went straight to my ostomy, I had gotten down the two bottles and we were ready to go do my MRI and in my case watch some Finding Nemo to avoid feelings of claustrophobia and cleithrophobia.

Honestly it was the shortest MRI I ever had, typically I can finish a movie and half of another. But Thursday I didn’t even get to finish Finding Nemo before it was over. Though it was still after 5 when we finished.

Afterwards I got La Rosa’s breadsticks because we don’t have a La Rosa’s in my town and they are so so so good. My mom ate half of it, which was fine because we also went to a little pub called the Cock and Bull which has amazing spinach artichoke dip and I got to enjoy a bit of that too before pain and nausea kicked in, but it was totally worth it, would have done it again.

We explored main street a bit, but basically everything was closed. So we went back to the hotel and I worked on my biology homework, took a bath, and then went to bed. Although admittedly I got zero sleep because my mom snored all night. I love her to death, but that night I was a bit tempted to smother her to get some peace and quiet (I love you mom ❤ Haha).

Friday we were up and moving by 6:30 to beat Cinci traffic and get to the hospital for my appointment, luckily we would be getting out early since I would not need to be staying to replace my NJ tube afterall.

The appointment went very smoothly. I got a referral to the geneticist at Cinci for my EDS, got a referral to a rheumatologist physical therapist to work on my joints as it is my most pressing problem lately, and the MRI showed remission of my Crohn’s! Which meant that we could talk about getting a surgically placed feeding tube as opposed to the feeding tube that goes down my nose.

Over all I was very excited to have my doctors listen to me and my concerns. They asked me about ileostomy reversal which I told them I had no desire to have it reversed because it had made my life so much easier. I didn’t have to worry about fistulas and it had made my disease so much more manageable.

On top of all of that they went ahead and gave my my flu and pneumonia vaccine and ordered some more labs to check all my vitamins and more on my liver because my doctor said low vitamin D could also create the high ALT levels.

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[Image shows 4 photos of bandaids over my forearm, arm crease and on both of my upper arms.]

Luckily all my other labs came back normal so I get to continue my Entyvio treatments since they are working! And with that we got to go home, which I slept the entire way back due to the lack of sleep the night before.

 

And now it’s Thanksgiving Break! I’ve been doing some crafting, got plans with family, and I have some blog topics I plan to cover while I have the free time! Things have been a bit of a struggle but I’m keeping up and don’t plan on letting it drag me down anytime soon!

Thank you guys for reading and being patient with my updates, and I hope to have some more posts for you over the next couple weeks as the semester wraps up! 🙂

 

 

My October Update: College and Health

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[Image shows three spoons on a laptop background. Overlaid is clipart of torn white notebook paper with a red paper clip. On the paper in black text reads “My October Update: College and Health” with an orange leaf and at the bottom reads “Thee Crohnie Grace”]

 

The last time I posted was to bring awareness to Dysautonomia, since then I had my home infusion for the first time with Entyvio, saw a doctor about having difficulty swallowing, scheduled an ultrasound of my throat, saw an electrophysiologist and have to get a tilt table test to confirm what my cardiologist and electrophysiologist are almost certain is POTS, all while trying to balance my 5 college classes.

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[Image shows me on the couch with a green and brown blanket, I’m in a maroon sweatshirt with my port accessed, wearing my glasses.]

It was a bit of a hassle, one nurse showed up on Friday just to tell me she couldn’t do my infusion because I’m not homebound. Despite them calling a week earlier to tell me this already, they still showed up to essential waste my time. I was so upset. I was anxious enough because I had never had it done at home, and this nurse kept trying to reason with me and apologize. And I understood that she was sorry, but honestly it just annoyed me more.

Luckily we were able to get in contact with a different home health company who sent someone on Saturday so my medicine wasn’t put off another week, since it was already late. She was really nice and helpful and showed me how I could feel my port better since it was really deep, and she mentioned it still felt tilted but not abnormally so.

I tried to get my mom to watch The Little Prince during my infusion but she only half paid attention. It went by slower than normal because they didn’t send a pump so we just had to let gravity do it’s thing.

Once the infusion was done, she drew up some labs and off she went.

Shortly after, I began to have pain when swallowing. With all the changes in weather I assumed it was just a cold, or possibly tonsillitis since I had an issue with that a few weeks back. I ignored it and tried sipping on some hot tea, tried gargling some salt water, all the home remedies on could think of.

After two days of not being able to swallow my own saliva without pain, I went to QuickCare, where they gave me some heavy antibiotics and told me it was pharyngitis. I said sure and started taking the antibiotics and just hoped it would go away soon.

In the meantime I studied my butt off for my biology midterm which would be the deciding factor on whether or not I would be dropping the class.

Half way through the week I got my lab results. My white blood count was normal, I was anemic, and my lymphocytes and eosinophils were high. So that meant I didn’t have an infection because my white blood count would have been up. So with that I called my primary doctor and scheduled an appointment thinking it could be an allergic reaction (which my grandma and biology teacher still believe it could be).

So I went to see my doctor, she reviewed my labs and insisted if I was having an allergic reaction to the Entyvio that the benadryl I take every day for other allergies would have been helping. So she looked in my throat, she said it didn’t look red at all. So she began to feel around on my neck, she pushed in one spot and I noted that it specifically hurt in that one area when she pressed which was much lower down on my throat. She told me that since the neck has a lot of muscles she could only feel about 1/4 of the thyroid but thought she might have felt a knot or something, so she ordered a throat ultrasound to better examine my thyroid.

On top of that I had mentioned I was throwing up bile and having a sharp pain in the upper right side of my abdomen. I figure when I go to my doctor might as well get everything taken care of while I’m there so I don’t have to come back later. She felt around, and said she’d have them go ahead and do a gallbladder ultrasound while they were at it for me.

And with that I had to wait and deal with the pain when swallowing. I don’t go for my ultrasound until the 7th so gonna have to deal with it a while longer which sucks but it made me realize just how quickly I adjust to pain, like it still hurts to swallow but if I’m not focusing on it, I almost forget about it, it’s slowly becoming a new normal for me.

In the meantime I did other things like college and hanging out with my family!

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[Image shows my grandma squinting, she has long brown hair and is in a red tanktop, me in the middle with a dark green dress and brown sweater, my mom next to me with her hair in a braid, sunglasses on her head in a grey short sleeved sweater and above us is my sister Shelby smiling and looking like a super model.]

My family and I went out to a local farm and did a hay ride that didn’t have hay, fed goats, etc. I carved pumpkins with my dad and Sara (his fiance). And I binge watched a lot of Grey’s Anatomy with my grandma.

What time I didn’t spend with family was either spent studying, at the college, or at Amtgard or D&D the two things I do a week with friends, because I’m a geek.

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[Image shows me in a brown and cream medieval dress with a dark brown wool cloak with my arm extended looking up with closed eyes, I have a brown lipstick on and have an opalite headband like a circlet on.]

I passed my biology test, finished all my assignments for the week and had been surviving college, and squeezing my doctor appointments in early in the morning before my classes.

I saw my electrophysiologist Thursday, the only day he comes in to town for local appointments. I was really anxious, despite the cardiologist saying he was positive I had Postural Orthostatic Tachycardia Syndrome, he couldn’t do anything and thought an electrophysiologist could, but I was afraid the electrophysiologist would write it off as issues with my Crohn’s as so many doctors in the past have.

So many of my issues for so many years had been wrote off because of Crohn’s. If it weren’t for friends telling me I need to talk to my doctors about other possibilities I never would have learned about Gastroparesis, or EDS.

But the electrophysiologist was super nice, very sociable, and agreed with the cardiologist and said he was almost positive he was right, but he was going to confirm via a Tilt Table Test, he said he got plenty of information from my heart monitor I had to wear for a month, but that it was the formal way to confirm diagnosis.

So with that he told me to continue my Cardevilol for now while he looked into some medication that might be better for me. And scheduled the tilt table.

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[Image shows me sitting by the bathtub in a “Team Dysautonomia” tank top with my thin glasses on and a “meh” expression.]

 

Overall it’s been a crazy couple weeks, but tomorrow is Trick or Treat and I’m gonna dress up and pass out candy with my dad, Sara, and Chris. And Monday will be my college support group’s first official meeting! A lot still to come as my doctors want to try to redo my botox injections and pyloric dilation to try to get me off the NJ tube since it definitely doesn’t help my throat. In the meantime I’m hanging in there and smiling the whole way through. Life is good and I am happy. 🙂

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[Image shows me in the car I’m wearing a tan/white sweater and green with a black collar shirt under it. I have my opalite choker on, wearing some neutral pink lipstick, basic makeup. NJ tube, thin glasses, and purple fingernails with my hand resting against my face.]