Making First Impressions: College and Disability

[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.

[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 🙂

[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.]

 

 

Thanksgiving Break & Health Updates

[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.

[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.

[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! 🙂

 

 

Wheelchairs and My Week

[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 “Wheelchair and My Week” and below is a clipart of the disabled stick figure in a wheelchair logo.]

It’s been a while since my last post, thanks to college keeping me super busy. What time I’m not at college I try to study, or I’m at the doctors, or trying to spend time with friends and family. But since I can’t sleep due to stomach pain and nausea, I figure might as well let everyone know how things have been.

My port is still healing up, I’ve pulled the stitches a couple times by accident trying to carry my backpack or stretching too much while forgetting it was there. I go back to Cinci on Monday, just a follow up. They scheduled me for an MRI but we are not sure if that is going to happen since I really don’t want to have to pull my NJ tube and replace it all in the same day.

This coming weekend I’ll be going to Maryland for the LARP event I go to twice a year. It will be even better now that I have gotten my new wheelchair.

[Image shows me in a striped dress and black and white cardigan in a wheelchair outside my house.]

I got to take it for the first drive last Friday when I went to go see a band called Dino Drive that plays around town. My friend and boyfriend know the band members so they wanted to go. I figured I would take some pictures of the band and it would allow me to use both hands to take pictures rather than trying to take pictures with one hand on the camera and one trying to balance me on my cane. Not to mention I could take more pictures because I wouldn’t have to worry about fatigue or pain from standing during the show.

Of course, I soon realized just how awkward it was. I don’t remember if I felt awkward when I first started using my cane or not. But I know I was terrified people were going to think I was faking since I could stand up out of the car to get my own wheelchair. Or that they would think I was faking if I crossed my legs.

I began to feel this nervousness inside due to the fact that many people don’t realize all the reasons people use a wheelchair. I felt I had to commit to it once I started, despite the anxiety and nerves. I tried to act confident in order to “fake it til you make it”.

I wanted to be happy, because I was out of the house, my knees didn’t feel so strained like rubber bands about to break, my ankles didn’t ache, and I wasn’t dizzy. I felt better. Except for the butterflies in my stomach.

We went in through the back since the front entrance was just one big stair. Their idea of accessible was anything but. I was determined though to be independent, after all, that’s part of the reason I had gotten the chair was for freedom and mobility. Of course the curb before the ramp seemed to be too much and my friend helped me over it. Though I felt guilty because I could have pulled my wheelchair over the curb myself if I had just stood, even if it caused me pain and discomfort, I was not paralyzed. Except that once again the fear of being judged for being able to walk, even a short distance, I feared would lead to someone assuming I was faking.

Once inside, I mostly texted a friend. Feeling awkward and out of place. My anxiety getting the better of me. I tried to convince myself it was alright. I wasn’t faking my pain, I wasn’t faking being disabled. I just was not disabled in the way most people perceive. And it did not mean I didn’t need the wheelchair.

My friend made me feel better about it though, even suggesting that when I cosplay as Poison Ivy for PopCon that she would help me decorate my chair with ivy and flowers to match the cosplay.

Another one of my friends told me that I shouldn’t be afraid to ask for help because people want to help me 24/7 with things that they can’t help me with. They can’t take away my pain, can’t take away my nausea, can’t make my illnesses go away. But they can help me over a curb or up a ramp. He said, “You are doing them a service by letting them help you.” Which made me feel a little bit better.

I had a 3rd friend say she was going to get glow sticks to put on my chair for the Maryland LARP event to brighten it up and make it fun, and also to help see at night.

I had all these people supporting me and telling me how happy they were for me, and how much wheelchairs had helped them.

But then I had remembered the words my grandma said, “You better not get used to it, because I’m not going to see you in that all the time.” To my father insisting I didn’t need a wheelchair for vacation and so I pushed through. I thought of all the people who saw me in a wheelchair as giving up. I do not give up.

If I had given up, I wouldn’t be here right now. I would have thrown down the towel 10 years ago and said I’m done, no more surgeries, no more medicine, just let me die. But here I am, fighting to make my life the best it can be, because I DO NOT GIVE UP.

If I set out to achieve something, you bet your buns I’m going to do it. I’m the girl who will push through post-op pain and tonsillitis to make it to college for the week because I can’t miss my classes and test.

[Image of me laying on the couch in a tank top from the chest up, you can see my port incision, I am exhausted and have a worn out expression on my face.]

I am the girl who dislocates an ankle in the middle of her art class, hobbles down to the nurses hall, gets ice and wraps it and then goes right back to class. I am the girl who puts down my own feeding tubes, who’s intestines are on the outside of me, who has endured countless situations where I thought I couldn’t handle it anymore, I thought I was done, but I didn’t.

[Image of my foot in art class propped up on my leg wrapped up with an ace bandage and holding an ice pack on it.]

Using a wheelchair isn’t giving up, it’s me pushing myself through the pain to enjoy life. So I can go to the concerts, so I can go to events, so I do not have to be miserable and in pain to enjoy the little things. Having an NJ tube is not giving up, it gives me the nutrition I need to push myself. Having my ileostomy is not giving up, it’s given me freedom from being stuck in bathrooms and having to have countless fistula surgeries.

If you think I’ve given up, you are wrong. I’ve only just begun to live.

Project: College Support Group

[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. 

[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.

[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!

[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…

[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.

[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!

[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 🙂

 

Port Replacement and Tonsillitis

[Image shows three spoons on a laptop background. Overlaid is clipart of torn white notebook paper with a red paper clip. On the paper reads “Port Replacement and Tonsillitis”  below is a silver spoon and beneath that is small red text is the URL for Thee Crohnie Grace Blog]

Upon finding out that my port had flipped on me, we had been scheduled to go back up to Cincinnati Children’s to get it surgically replaced. Which meant getting up at 7:30am on Friday for the four hour drive to the hospital.

We got there and went through all the paperwork and the nurse reminded me I needed to take care of my living will and such. I told her I knew what I wanted done, I just didn’t like filling out the paperwork because it was very morbid.

Earlier that week my grandma and I had a very similar talk about what I wanted done if anything  happened. I told her I wanted them to pull the plug and donate whatever organs I could. She was fine with it. Though I imagine if it actually came down to it, she and my family would have a hard time making the decision in the moment. Which is why the recommend doing the paperwork.

So we filled out paperwork, got weighed, got measured and then went back to my room. Room 18. I changed into my robe and socks and patiently waited for the nurses and doctors to come in and ask a billion questions.

[Image shows me on the hospital bed in my gown with a blanket over my lap. I have my head resting on my hand. I have my glasses and my feeding tube.]

We covered a lot. She mentioned by tonsils looked swollen but I told her I had just been having bad allergies lately. We talked about my heart issues. The nurse agreed it was likely POTS since I have Gastroparesis and EDS and they are all sort of lumped together. I showed the nurse my hypermobility trick to which she told me the usual “You shouldn’t do that!” But we all had a good laugh and the nurses and doctors there are always super nice.

Soon the doctor came back and took me to the OR, telling me about her grandma that lived in WV and how she remembered going to visit her grandma and picking black berries and seeing trains everywhere. She joked around with me and showed me the doctor’s entrance to the OR since the other entrance was blocked by an empty bed.

Laughing gas got the IV in and then they pressed on my throat for some reason while they pushed the sedative and I was out like a light.

Thanks to a good anesthesiologist I woke up not freaking out, just in pain. Once that was taken care of I was given a sponge with some water to wet my mouth. My throat hurt from being intubated but that was normal.

They brought my mom in and she noted that they made the dressing of my port into a heart!

[Image shows upclose of my chest. There is a heart shaped gauzed taped to my chest over my port incision.]

Once I was able to get dressed with the help of my mom we were able to leave. I just had to go down to the pharmacy and wait for my post op prescription to be ready.

 

My mom and I.

Me in a wheelchair.

[Image to the left shows my mom resting her head on top of mine as I attempt to smile. I’m sitting in a wheelchair. In the corner of the photo says “Thanks for Always Being There”. In the photo to the right I’m sitting in the wheelchair alone resting my head on my hand. I’m wearing a polo shirt with kittens on it and leggings with colourful cat faces all over them.]

Once we got the prescription we were free to go and head home. It was about 6pm by the time we left, which meant we wouldn’t get home til almost 10. I fell asleep in the car so it made the ride home feel a lot shorter.

I slept once I got home. My throat was hurting more the next day, to the point where I was having difficulty breathing. After my allergy meds not working I decided to go to our Quick Care. They gave me a bunch of antibiotics and told me I had tonsillitis. Luckily they don’t like to remove people’s tonsils very much anymore which meant while I would have to deal with a sore throat for a while, I would at least get to keep my tonsils.

And that has been my weekend. This week is midterm week for college, so on top of being sick chronically and normal sickness, I am completely exhausted from college. But I have plans in the works for something that while it will take my energy, the reward will be worth it!

[Image shows me in a tank top with my heart gauze showing, NJ tube, no glasses, trying to force a smile but exhausted.]

Instagram for the Chronically Ill: #SpoonieLivingApp

[Image shows three spoons on a laptop background. Overlaid is clipart of torn white notebook paper with a red paper clip. On the paper is a small clipart of a minimalistic camera with black text that reads “Instagram for the Chronically Ill: #SpoonieLivingApp” and below that in small red text is the URL for Thee Crohnie Grace Blog]

What started out as a small project for PhD student Sam Martin is now taking the chronically ill community to a whole new level. SpoonieLiving App is the instagram for the chronically ill, featuring stickers, profiles, and a wall of fame where photos can be posted and people can like said photos. The stickers include signs warning of “low spoons” or “low energy”, all the way to having specific banners for individual illnesses and disease.

Sam Martin is a spoonie herself, with Celiac Disease, IBS and Arthritis. To quote her “About SpoonieLiving” page, Sam is “writing a thesis about how people with chronic illnesses…use social  media to share experiences of their illness and find information.” As well as created to, “see if the use of illness and dietary related stickers would help individuals express themselves… It is hoped that using stickers will help people creatively manage their illnesses on a daily basis.”

[Image shows what looks like a table in front of a window blurred out of focus. It then has a camera in blue and white similar to that of Instagram’s camera, but with a rainbow spoon beneath it that reads “#SpoonieLiving”. Then follows with the options of “Photo Library”, “Collage”, “Camera”, “About #SpoonieLiving”, and at the bottom has the “Wall of Fame”, “Inspiration”, and a settings option.]

Upon opening up the app you can pull pictures from your phone. It allows you to add a background if you want, then it comes up with the image editor. It’s all very basic and simple but serves it’s purpose. The fames come in various shapes, leaves, coffee cup, and of course spoons.

Then come the stickers, a variety of things are here such as traffic warning signs that say “No Energy Come Back Later”, a wooden spoon that says “Spoonie Life”, Banners that read “Spoonie Super Hero”, and of course the banners for individual illnesses and diseases.

[Image shows a selfie of me at my college, on a blue/purple/pink geometric ombre background. On it has a clipart sticker from the app’s collection that reads “Straight Outta #Spoons” and at the top is a black and red banner that reads “IBD Warrior”, at the bottom there are a few of many stickers available. They are all banners, the first is red and blue with yellow text that reads “Managing PTSD One Spoon A Time”, the next is a purple and red banner with white text that reads “Managing IBD One Spoon A Time” and the last is a black and red banner with white text that reads “Stomp Out Transverse Myelitis”.]

I give them credit for the wide variety of illnesses that they cover in their stickers: Gluten Free stickers, Epilepsy, MS, Lupus, Coeliac, Chronic Pain, Diabetes, Fibromyalgia, Transverse Myelitis, POTS, Crohn’s and Colitis, Stoma Superhero Stickers, IBD, IBS, PTSD, Rheumatoid Arthritis, Klippel Trenaunay Syndrome, ME, Allodynia, Gastroparesis, Hypermobility, Mixed Connective Tissue Disease, Bipolar Disorder, Cluster Headaches, Chronic Migraines, PCOS, Endometriosis, TPN Warrior Stickers, CRPS, Sepsis Survivors, Depression, Ehlers Danlos Syndrome, Dysautonomia, Chronic Kidney Disease, Life Support Survivors, Catheter Dependents, Septic Shock, Arthritis, Allergies, Ankylosing Spondylitis, Lyme Disease, and even Invisible Illness Warriors and Undiagnosed Spoonie stickers for those who are still a medical mystery.

The Image Editor also includes textures, filters and photo adjustments.

The next unique feature about this app is the “Wall of Fame” where you can post your edited photos and go and like or comment on other’s photos to help them reach the top of the wall.

Currently at the top of the wall with 111 likes is user Glutenfreeoreo.

[Image shows a girl in a black and white photo with long hair and glasses. On the photo is a teal and pink banner with white text that reads “Undiagnosed Spoonie” and the #SpoonieLivingApp watermark. She has a little medal with the 1 on it to show she is at the top of the Wall of Fame]

And it also allows you to look at your own profile to see all your photos you have made on the app, along with how many likes they are receiving.

[Image shows a dark berry shade of purple banner that reads “My Profile”, it then reads on a white background in black text “theecrohniegrace” and my email along with my profile picture and the option to “Update Profile”. It then shows “My Posted Pictures” which then is followed by all my selfies with stickers from the app and so forth.]

You can email the creator with suggestions for stickers if you can’t find one for you, or just have some cute ideas for more stickers. It’s a great way to express yourself and find others as well. And if you post your photos on instagram, there’s a good change she will repost them to her instagram which can be found by clicking on the “Inspiration” menu on the first page.

Overall, I think this is an amazing app at letting spoonies express themselves and having a small community of their own, the stickers are fantastic (minus the misspelling of Crohn’s disease), and I love seeing when she uploads more, I can’t wait to see what Sam comes up with next.

Go check it out, it’s available free on ITunes and also in the Android Shop!

“You’re Too Young To Be Sick”

[Image shows three spoons on a laptop background. Overlaid is a clipart of white torn notebook paper with a red paper clip. On it in black text reads “You’re Too Young to Be Sick”. And below in small red font is the URL for TheeCrohnieGrace Blog.]

The other day, I went to the State fair with some friends. I took my cane because I knew that there would be a bit of walking involved. And even knowing I couldn’t do the rides, I wanted to get out of the house and hang out with some friends.

When I got there it didn’t seem like a huge deal, there were other people using canes and wheelchairs, although they were older, I tend not to really judge by age someone’s health, since knowing my own.

As my friend took her son to this kiddy rollercoaster in the shape of a long alligator (it was his favorite ride), I was met with the conductors words:

“You’re a little young to be using a cane.”

   Looking back I can think of a thousand witty replies that would have left him cold in his tracks. But at the time I was just sort of taken aback and said, “You’re not the first person to tell me that.”

   But what I really wanted to say was, “Do you say that to kids in wheelchairs? Do you go into Children’s Hospitals and tell the kids to get out of bed because they’re too young to be that sick? Is disabled something only old people can be? Would you be saying this to me if I was in a wheelchair? Do you think my age has anything to do with my health? Would you still be saying that if you had seen me in the hospital at 9 years old for months on end?”

    But it hit me that this isn’t the first time someone seems to think that young people are full of energy, they can’t get sick. But age does not have any correlation to health.

     There are kids younger than me that are sick, kids who are just born, and barely even take their first breath before they are met with life long conditions they didn’t sign up for, things that could take their lives, or make their lives more complicated from day one. And there are people older than me, who may have been those kids who were sick on day 1 or who may just be finding out they are sick. And then there are people my age: Some have been diagnosed for years like me, some are just being diagnosed today, and some are still fighting for that diagnoses, trying to figure out what is wrong with them, why they aren’t just like everyone else.

     In this world, once you realize it, nobody is too young for their life to be snatched away from an illness or disease, to get into an accident, etc. Nobody is too young to be disabled.

    So to the man who worked the Alligator kiddy ride, at 9 I thought I was too young to have all of this happen to me. But now? I’m thankful for every day I have, even if I have to use a cane or wheelchair one day, even with my ileostomy, my port, etc. Yeah, I used to think those were only things that happened to elderly people too, until it happened to me. But for some people, they will have the privilege to remain abled bodied all their lives, they will never be hit with the “Oh crap, this CAN happen to anyone.”

     It’s why I blog, it’s why I post about it, to break the silence and stigma that comes with disabilities and chronic illnesses. So that one day, maybe kids won’t have to be faced with the same insulting questions that we have to answer now.

[Image shows me sitting on the ground, but all you can see is my chest up, by the ferris wheel. I’m in a black t-shirt and have my black and green glasses, red lipstick and red hair.]

Mental Health Correlations With Physical Health

[Image shows 3 spoons laying on a laptop keyboard. Overlaid is a clipart of a white piece of torn notebook paper with a red paper clip. On the paper reads in black text “Mental Health Correlations With Physical Health” and a green distressed smiley face. At the bottom of the banner is the URL for TheeCrohnieGrace Blog.]

I’m going to start off with my unpopular opinion which to most physically ill people is not that unpopular of an opinion. So, the posts/videos/etc about “If Mental Illnesses Were Treated Like Physical Illnesses.”, I am not a fan. As someone who suffers from both I can tell you that neither get treated better than the other and the lack of compassion is still there from the majority of the world.

What most people do not seem to understand is that people who suffer from physical illnesses/disabilities are likely to develop anxiety of depression because of it. In almost every support group I have been in, the majority of them were also on some pill for their anxiety or depression brought on by their disease/disorder/etc.

I want to talk specifically on my own experiences with this, because I can only speak for myself, not everyone else. When I first got sick, few took me seriously. My teacher thought I was faking my stomach pain that left me in the fetal position during recess. When I was in the hospital for a long period of time, the teacher and principal both refused to take any of my make up work, kicked me off the student council, and when I got back kid’s called me names because my face was swollen from the high dose of prednisone I was on.

This led to lots of anxiety, depression, and issues with my self esteem. It was a lot more than most kids had to deal with at that age (although now thanks to support groups I know I was not alone in my childhood even).

I started seeing my first psychologist the same year I got sick, was put on antidepressants a few years later. I lost my sense of identity in it all. I wasn’t sure who I really was, depression will do that to you sometimes.

As the years went on, the depression hit its peak, but then started getting better once I started immersing myself in support groups, meeting other young kids, people who had been through more hell than I had, and still managed to keep a smile on their face.

I wanted to be more like those young adults who smiled in the face of their illnesses both mental and physical.

“Recovery is not linear though.” It takes time. And that’s okay. There are still days when I am in so much pain and feel like people don’t get it and I will get depressed, the days when my brother makes fun of me for using a mobility device, the days I worry about ostomy leaks, when my chest hurts and the anxiety sets in.

My mental health correlates directly with my physical health sometimes. I am more likely to get overwhelmed and have a meltdown when I am already in pain, or nauseated, or dizzy because that is a lot of stimuli as it is, and then people will ask you a million questions which makes me uneasy, and then I will find myself agitated before finally escaping to be alone and melting down: crying, screaming, hitting myself.

Recovery isn’t linear. I’m working hard in therapy to better myself, not for anyone else but myself. These things take time, and I will never be perfect because nobody is. And I know that as long as I have my physical illnesses (Crohn’s, Gastroparesis, EDS) that I will always have bouts of anxiety and depression because there are some days when you can’t help but to worry about what the future holds, or get upset over how you may feel robbed of opportunities. It does get better though.

I thought I would never be at the peace of mind that I am now, and it’s because I’m not trying to be someone I am not, I’m open about myself, I’ve met hundreds of other beautiful souls who are struggling just as I do, and while these diseases may be awful, they have given me some wonderful friendships that I wouldn’t trade for the world.

 

 

Entyvio Round #2

[Image shows three spoons laying on a laptop keyboard. Overlaid is clipart of torn notebook paper with a red paper clip. It reads “Entyvio Round #2” with the Entyvio (vedolizumab) symbol below it.]

Friday was my second round of Entyvio at the infusion center locally. Rather than driving four hours to Cincinnati for a thirty minute infusion, we were able to have it scheduled to do locally. I woke up early to get ready because I was nervous about my first time being accessed while awake.

I had already had it planned that I would put in my headphones, turn up the music loud, and just suck it up cause it would only take a second, even if it hurt, it would be over fast. I kept repeating that to myself as I picked out a tank top that would hopefully give easy access to my all-access-pass aka my port.

My mom picked me up and we headed off. The infusion clinic was in the same building as the outpatient lab, just on the other side of the building. We parked, headed in and checked in, I filled out all their paper work and got taken back to the infusion area. It was mostly filled with elderly folk with one person who looked in their 30s or 40s.

The nurse was also a bit older, but super nice. She asked for all my info again and then pulled out stuff to start an IV, when I told her I had a port. She seemed relieved and said, “Well that makes this easier!” Which was a relief to me.

So instead she gathered up stuff for a port, we had a bit of confusion over the needle size because the size of the needle they put in that comes with the port, they don’t have elsewhere. But she found something she thought would work, and I trusted her.

As she walked over and cleaned me, I prepped myself and put in a headphone and found a good song. She came over with the needle and I stopped her long enough to press play. Within of second of pressing play, she stuck me. And that was it. A little pressure but not nearly as much pain as starting an IV. I was incredibly relieved and happy. Since I had grown to fear IVs due to being stuck so many times, infiltrations, etc, this was a huge relief and pleasant change. It drew blood and flushed perfectly.

[image shows me from the glasses to upper chest sitting in the infusion chair. I had my black and green glasses on, NJ tube, I’m wearing a grey tank top that has an image of Thor on it, I’m pulling it down to show where the port has been accessed.]

Now I just had to wait for them to bring up my medication. They have the pharmacist deliver the Entyvio, I guess because of how expensive it is. It costs up to $25,ooo for each infusion.

The nurse and I chatted in the meantime. She asked me how long I would have to have my feeding tube, and I explained I wasn’t really sure because I had Gastroparesis. Then she got interested in it because she was like “Well they couldn’t have used an NG then cause the stomach isn’t working so is that an NJ?” And she asked me about what I was getting the Entyvio for and I talked to her about my Crohn’s. She asked how getting my port went, and I told her for the most part it went really well except for waking up was a bit of a struggle because their local numbing didn’t work because of EDS.

[Image shows a clear bag filled with my medicine hung up on an IV pole with a drip and tubing.]

Then they brought up my medication and hooked me up. I asked again to make sure it was only going to be 30 minutes. It was great to have a short infusion instead of like Remicade where it was 4 hours, which for me became 8 hours because of a reaction I had to it. I thought 30 minutes would go by a lot quicker but one can only scroll on social media for so long before getting bored. I went to download a game, but I didn’t have any wifi so by the time the game had downloaded, the IV pump beeped letting me know that my infusion was already over.

The nurse helped remove the tape and de-access me. And after a small cotton ball and paper tape, I was free to go! Now only 12 more weeks before I will know if it even is working!

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

[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.