College With a Disability

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Reality of Life with a Chronic Illness

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[Image shows three spoons on a laptop keyboard. Overlaid is torn white notebook paper with a red paper clip. In black text on the paper it says, “The Reality of Life with a Chronic Illness”. There is a picture of a loop recorder and a bard power port in the bottom corners of the paper. And it the bottom left corner is the Thee Crohnie Grace blog logo.]

This week has been a rough week for me, I started with a cold and ended it with surgery and my Entyvio infusion. My electrophysiologist had decided at our last appointment that with how high my heart rate was getting (190+) that he wanted to monitor my heart more regularly. He suggested a loop recorder, a chip that is inserted under the skin to monitor the heart. For many it is placed under conscious sedation but he only uses lidocaine shots and no other drugs. When I mentioned to him that because of my EDS that local numbing doesn’t always take on me, he insisted that connective tissue disorders have nothing to do with numbing and that lidocaine works on EVERYONE.

Luckily, when I got the hospital for the procedure Thursday the nurses at the Cath Lab recognized me almost immediately since I’m there frequently to place my NJ tubes and they have come to know me as “the girl who places her own tubes”.

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[Image shows my legs crossed and feet bend inward with my hospital gown with blue and green diamonds on it. My feet have purple and pink ankle socks on them.]

When I mentioned to them my anxiety about the numbing not working they basically said screw what the doctor said, you’re one of our favorite patients and if you need something we will help you. So they got a higher percentage of lidocaine and also gave my dilaudid and fentanyl to help calm me down. Sadly it didn’t do much.

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[Image shows me in a hospital bed, there’s an IV pole behind me with two bags hanging from it. I’m resting my hand against my face and have my glasses on and am wearing a hospital gown.]

After an hour or so another nurse came in and actually explained the procedure to me, something the doctor had not done. They brought in everything into my room, not taking me back to any OR or anything. They cleaned my chest off with betadine and alcohol.

It was then that they pulled the screen up to keep me from seeing what was happening, which only made me panic more. I was upset at the doctor for being rude and not listening and I was upset that everyone kept telling me I shouldn’t worry because it was just a simple surgery or being told by a doctor who had never gotten a tattoo that if I could handle a tattoo, then I could handle this surgery. They gave me a couple shots of lidocaine which I felt all of, and then a sharp pain and burning which took my breath away as he cut an incision into my chest above my tattoo. I started hyperventilating from the pain and couldn’t make out words or full sentences from the pain and also from the panic. I felt terrified, in pain, and embarrassed by my reactions.

Once it was over they glued the incision and patched me up with some gauze and IV3000 because the nurse remembered that I had sensitive skin to other adhesives.

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[Image shows a picture of my chest, you can see my previous scar from my port surgery, my phoenix tattoo and then a bloody glued up incision above the tattoo.]

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[image shows me with my glasses pushed up onto my head, wearing a hospital gown with orange betadine stains, my mom is sitting behind me in a jean jacket.]

My mom helped me calm down before we left and went to drop off my prescription for some pain medication. Friday went by fine, minus some pain and discomfort and some feelings of nausea but nothing too bad.

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[Image shows me in a grey tank top, my feeding tube unhooked and hanging down, my chest is taped up with a small piece of gauze over my incision, no glasses on.]

Saturday I woke up bright and early for my Entyvio infusion, my plan was to get my infusion, change my surgical dressing, and then go to the comic convention that was taking place at our local art centre. I woke up with a fever but otherwise feeling just fine.

[Image on the left shows me with my makeup done, no glasses, in a black lacy top with my Mjolnir necklace, under the lace you can see my tattoo faintly and the gauze over my incision site. Image on the right shows a white thermometer on a blue, white, and yellow bed cover, the thermometer reads 101.8]

My home health nurse got there around 11 and we went to change my surgical dressing first since it was covering the access point of my port. As she changed the dressing the glue fell off and the wound opened and began to ooze. Leading me to freak out a bit. She tried to access my port once we got it recovered. Twice she stuck me and while it was in the port, there was no blood coming back when she pulled on the syringe.

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[Image shows me visibly upset, holding a dressing onto my chest, my black shirt unbuttoned to access the site.]

After the second try and seeing that the wound was oozing through my new dressing, we decided it would be wise to go to the ER and get it checked and that she would come back tomorrow and we could try again.

So my mom and I headed to the ER, expecting them to close the wound with stitches or something.

[Image on the left shows me with my glasses on and face being covered by a medical mask, my hand still on my chest. Image to the right shows me in the emergency room with a gown on.]

Due to the fact that the flu is rampant right now, my mom made me put on a mask to keep me from getting anything from the other people sick at the ER. Once we got back the nurse said all they could do for the opened surgical site was clean it out and bandage it, that they weren’t allowed to close it once it reopens because it would risk sealing in something that would lead to an infection.

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[Image shows my from half the face down to the top of my chest, my dressing has been taken off and there is a small incision gaping open in my chest above my tattoo, my feeding tube is hanging down across my chest.]

So they patched me up and sent me home, they didn’t do labs, or anything except slap a bandaid on my open wound. And with that I had missed the first day of the comic convention. So I went home and slept for a while and anxiously awaited the next day when my home health nurse would be back to try to access my port again for my infusion.

So today I woke up, my chest itching and covered in red patches. So on top of my pain medicine, I also took some benadryl to help with the rash all over my chest.

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[Image shows me in a dark green tank top, my tattoo and Mjolnir necklace showing, and my incision covered with special bandaids, my chest covered in red splotches all over.]

And then we waited for the nurse to come back, we set everything up, she tried to access my port again and still no blood draw. So she got a different sized needle and tried a second time, still nothing. Determined though to not get stuck again and also to get my port to work because it needed flushed regardless of whether or not I got my Entyvio infusion.

So she had me raise my arms, lay on my side, lay back, turned the needle every which way, until finally after 30 minutes or so of digging around and trying to find the perfect position, we finally got blood return and was able to flush the port. So she flushed it with heparin before we started the infusion just to be safe.

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[Image shows a black and white picture of me laying back, with my glasses on, necklace laying off towards the side and port accessed and taped down.]

By the time everything got finished today, I had missed the second day and final day of the comic convention. It has been one hellish week and I will be so thrilled when things ease up, but it has been a good example of how no matter how simple a surgery is, it’s still surgery, there are still complications that can happen, and pain is pain. And this is just the average life of someone with a chronic illness.

Project: College Support Group

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Next, our Secretary!

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

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

And lastly, we have our Treasurer…

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

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

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

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

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

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

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

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

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

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

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

 

Follow us on twitter @WSpoonies 🙂

 

Port Replacement and Tonsillitis

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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 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.

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[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!

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[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.

 

[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!

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

“You’re Too Young To Be Sick”

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[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.

image1 (84)[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.]

Entyvio Round #2

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[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.

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[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.

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[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?”

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

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

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

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

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

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

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

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

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