Wheelchairs and My Week

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[Image shows three spoons on a laptop keyboard. Overlaid is torn white notebook paper with a red paper clip. On the paper in black text reads “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.

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[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.

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[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.

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[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

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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.]

Don’t Forget to Take Your Medication: An App for All the Chronically Complex Folks

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[Image shows three spoons on a laptop keyboard. Overlaid is clipart of torn white notebook paper with a red paper clip. On the paper in black text reads “Don’t Forget to Take Your Medication: An App for All the Chronically Complex Folks” and below in small barely visible red text is the URL for Thee Crohnie Grace Blog]

I am probably the worst about taking medication without having someone breathing down my back reminding me. I have a bad habit of just not taking my medicine. Like my potassium, or occasionally something more serious like prednisone or flagyl because they are just super gross and make me feel sick. So sometimes I decide to be a bad patient and just skip it.

Well with proper motivation and something reminding me and essentially breathing down my neck to take my medication, I no longer skip doses of anything. And that is where this App comes in handy. It not only gives you an alarm, it gives you motivation through chances to win gift cards or donations to charities, and provides you information on your medication in a simple way.

    Mango Health! 

   This app allows you to plug in your medication that you are on, it will ask you what form which includes a variety from tablet to capsule to a concentrated form or liquid , injection, pad, inhaler, paste, etc. It gives you the option if you chose a pill to put in the shape and color of the medication so you will not forget. Then it has the choice to plug in your quantity so that every time that you mark that you have taken your dose, it will keep track of when you run low and need to order a new prescription. It will then ask for your dose, any notes such as “take 10mg with food”, and how often it needs to be taken and at what time.

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[Image shows an orange border that reads “My Meds” and then has lists of the medicines I am on “Entyvio, Depo-Provera, Zofran, Tramadol, Klor-con, Carvedilol, Celexa, Klonopin, Zyrtec, Tylenol” It then will tell you your percentage of times taken on time. how many tablets or mL you have remaining .]

Besides each of your listed medications it will tell you your percentage of times that you have taken your pills on time, along with the amount of tablets or mL you have remaining. It will also show the community percentages of how often all people on Mango Health remember to take the same medication.

On the “Home” tab it will give you a schedule below “Tips On Getting Started”. This schedule will tell your what your next medication is and at what time, it will tell you how many points you have (you get 10 points for taking all your meds on one day) and what level you are.

It will also give you a quick view of all of your medication. As well as your history such as day streaks for how many days you have taken your medicine correctly in a row, your lifetime percent of taking your medication on time, and your monthly percent.

There is a little quick view for your inbox for if you get new messages from Mango Health, and then an option to fill in “My Latest Mood” to record how you are feeling that day.

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[Image shows the Mango Health Banner, along with a bunch of mini banners “Schedule” which reads “Today 11:00PM Klor-Con 2 tablets”, “Points: Total Points 20. Level 1. 30 Points to Next Level.”, “My Medications” with little black and white images for injections, pills, and liquid medication and then the names of those meds, then you can see the top of the “History” banner. And at the bottom there’s a banner with a blue house that says “Home”, an envelope that says “Inbox”,  a clock that reads “History”, a little pill that says “My Meds”, and then an ellipsis that reads “More”.]

One of the greatest features of this app is it’s ability to find interactions between your medication and over the counter medication as well as interactions between your own medications. Mango App can answer any questions you may have about your medication without having to go through pages of google and trying to figure out what certain terms mean. It’s all here in plain English.

It will tell you all the brand names for the medication, what it is used for, what you need to tell your doctor before starting, things you should know while taking the medication, side effects, how it’s taken, what to do if you miss a dose, how to dispose of the medication, and just general drug facts.

If any of your medications interact, Mango Health will let you know how serious the interaction and what to watch out for. As well as it will let you know if you medication will interact with any over the counter medication such as tylenol or allergy medication.

The next tab is your History tab which includes the medication you have taken and your mood input! The tab following that is My Meds which is where you can see all your medication and check it’s information and alerts of interactions right there without having to scroll through your entire inbox.

The More tab just includes “Settings”, “Help”, “Invite Friends”, and “Rate Us”.

The motivation to take your medication is point based, as you level up and gain more points you have a chance to win gift cards to some of your favorite stores or restaurants or to donate to a charity. It is compatible with iOS 7 or later on all I-Products. It’s ratings are fabulous and I can’t agree more with how useful it is and how it helps motivate me to take my medications throughout the day!

So if you are looking for a motivational way to remember to take your medication, or take a lot of medication and need to know how they react together, don’t mess around with Google for hours, download Mango Health and save yourself some time!

Cardiology and Psychiatry: A Fun Week

 

Blog post[Image shows three spoons on a laptop keyboard. Overlaid is a clipart of torn white notebook paper with a red paper clip. On the top of the paper is a clip art of a pink anatomically correct heart and a brain in various colors. In black text reads “Cardiology and Psychiatry: A Fun Week!”. At the bottom in red text is the url for Thee Crohnie Grace]

On top of my exceedingly busy college schedule, every week seems to add a dash of something else by including a few doctor appointment’s.

This week’s dose of doctor’s appointments included a Cardiology appointment on Wednesday to follow up with my orthostatic pressure and tachycardia issues, and a Psychiatric appointment on Friday to follow up on various things from my behavioral therapy sessions.

Wednesday is the busiest of my college days, It’s almost back to back with Math, Art, and then Bio. From 11am-6pm. I ended up having to leave Art after a half hour to get to my appointment which I thought was at 1:30pm. Upon driving across town to the main hospital where I was told he would be, we discovered he was at their sub-unit today on the other side of town, and that my appointment wasn’t until 2:40pm.

So we drove to my apartment to pick up my stuff for Biology to kill time before heading out to my cardiologist appointment.

Upon getting up to Cardiology, the nurse came in and checked my HR and BP and informed me what I already knew: my BP was low, my HR was high. She said Dr. Ahmed would be in to see me soon and talk about my heart monitor results.

I always get anxious meeting new doctors, I’m afraid they won’t take me seriously, and will write my problems off because of my collection of illnesses. So when Dr. Ahmed came in and I saw he was an older man, I grew more nervous, which doesn’t help my heart rate much. He tested my BP laying versus standing, noticed the drop, then tested my HR laying versus standing and noticed the huge rise. My HR while laying was 98, and while standing went to 182. He commented that he was surprised I hadn’t passed out more often and noted that my heart monitor showed much of the same things, that my heart would spike incredibly when I stood up.

I told him that my primary mentioned POTS and said it had to do with my orthostatic pressure and had mentioned a tilt table test. He said he was going to put me on a low dose beta blocker (Cardevilol) and in a month see me again, if the beta blocker didn’t work he would send me to an Electrophysiologist who would do a tilt table test, and decided if more needed to be done such as a heart ablation or putting in a pace maker, but something needed to be done because he said the strain on my heart was far too great and he worried that if we didn’t get it down.

So with that I went to go pick up my prescription and read up on my new medication. I was a little concerned due to the fact that my blood pressure was already low and beta blockers lower your blood pressure even more. So my grandma became a little worried about that.

Next was my psychiatry trip on Friday, also with a new doctor. I had been seeing a nice lady for my behavioral therapy since February, we had made a lot of progress but there was still a frustrating problem that nothing was helping with: my meltdowns.  So after talking to my therapist for some time she decided it would be best to send me to psychiatry to try some new medication since lots of medication in the past has not been helpful.

I got there and had to do the mandatory drug test and what not, and of course it all came back negative. So then they checked my blood pressure and weight and sent me to the waiting room again before my new doctor came to see me. He was younger, and short, just a little taller than I am, and with just a slight accent.

We went back to his office and I tried to determine the best seat. The thing that freaks me out about psychiatry is I’m afraid they try to interpret every action I make, I know they don’t, not really, but it leads me to overthinking everything I say and do.

I sat down next to the book case so I could look at labels, because if I make eye contact with doctors I get intimated and overwhelmed and will likely cry. So I sat down and began to read the titles of all the psychology books. He started asking my questions about my relationships, family and intimate ones, asked about my home life, to describe my meltdowns, and then asked me why I was here.

I told him that to be honest, I didn’t have a lot of issues. I wasn’t super anxious,  I wasn’t depressed, I just needed something to help with the meltdowns. So he started asking me about my habits and roommates, and about my latest meltdown after I had been getting onto my roommates about their lack of help cleaning, the constant messes, and them just leaving their stuff where it doesn’t belong. One of my roommates confronted me by yelling at me and the other roommate had been causing problems behind the scenes by not talking to me and just to his boyfriend about me. It led to a massive meltdown as he confronted me and wouldn’t stop yelling at me despite my boyfriend and friend telling him to stop.

After this he started asking me more questions about my personality, if I was perfectionist, asked me about my grades, about my study habits, about how particular I was or if I had a habit of checking things or washing my hands too much, standard “OCD” type questions. When I informed him I did some of those things but I had logical reasons for them, they weren’t a problem. I washed my hands a lot because I don’t like when I touch wet or sticky things, or at the college because there’s a lot of germs and I have a low immune system. I checked the stove and locks a lot because I had a poor memory and didn’t want to leave anything unlocked by accident or leave the stove on and burn the place down.

Yes, some of my mannerisms weren’t considered normal but they were able to be explained. He asked how my friends and roommates felt about my habits. I said they felt I was controlling, and that I can become a “demon” when I start to clean and people try to interfere, that I could be a bit of a hoarder with things not like trash per say but I had a lot of stuffed animals that had no sentimental value but I couldn’t part with when I moved.

He asked me if I had heard of OCD, I said yes it’s obsessive compulsive disorder. I insisted I didn’t have OCD because it wasn’t a huge problem, minus the way some perceived it.

That’s when he said I had an obsessive compulsive personality which is also a disorder that typically the person with OCPD or Anankastic Personality Disorder, don’t see as a problem.

It’s characterized by a “general pattern of concern with orderliness, perfectionism, excessive attention to detail, mental and interpersonal control, and a need to control one’s environment at the expense of flexibility, openness to experience, and efficiency.”  (Wiki)

He prescribed a high dose of Celexa and Klonopin for my meltdowns and said he wanted to see me in 6 weeks to see if anything changes.

And with that I was off, and began to do more research on the medicines and also the personality. At first I didn’t realize that it was a disorder until I read more into it and realized just how controlling I can be at times and how my desire to be organized sometimes gets in the way of my productivity.  Like my desire to underline and high light all important key points in my school notebooks, but also feeling all things said are equally important so I find myself high lighting everything and focusing more on the order and less on the learning of the material, which was mentioned to me one day in Bio but I paid no attention to.

“Do you ever find yourself focusing so much on organizing that you find yourself not studying the material?” The lady next to me asked a week ago, I rubbed it off and said no, cause I didn’t see anything wrong with highlighting everything and color coordinating all my materials, even if I wasn’t finishing in proper time and not retaining the material cause of the focusing on highlighting and not what was being highlighted.

It’s funny how something I had never heard of clicks so quickly to who I am.

So I went to go fill my prescriptions and go home. Only to get a call that my insurance wasn’t going to cover my hospital entyvio infusions and that I would have to do home infusions and that we owed $50,000  for the last infusion covered. Then went to go pick up my medicine to find the insurance would only cover my liquid Celexa and it would be $62 with coupons for my Klonopin dissolvable tablets. So I guess it will boil down to Grace vs The Insurance Company. Ding Ding. Stay Tuned for next time to see what happens with the insurance.

College and Accessibility: It’s Not a Fun Challenge

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[Image shows three spoons on a laptop keyboard. Overlaid is clipart of torn white notebook paper with a red paper clip. At the top is a black graduate’s hat and below in black text reads “College and Accessibility: It’s Not a Fun Challenge”. Below is the url for TheeCrohnieGrace blog.]

I hobbled between the small crawlspace between wall and desk trying to make it to the wall where we hang up our art work, as I tried to make my way through, my cane snagged the edge of the chair and I fell, catching myself lucking by the chair. It was then I heard a voice behind me.

“Quite a challenge, huh?” My art professor said with a smile and a chuckle.

It took a lot of will power to hold back what I really wanted to say. But I let out a sigh and said, “Oh yeah.”

Let’s go back to before the summer, when I met with said art professor and also my college advisor for the first time. Cane in one hand, feeding pump backpack over my shoulder.

She had signed me up for 5 classes, the most I had taken at once, and with a world of new health issues and reoccurring health issues, I was feeling unconfident in my ability to handle all those classes on top of everything else I had to deal with.

I mentioned, “Well I’m a medically complex person so sometimes things just pop up and I end up missing a few days. So that’s why this back to back schedule may not be the best for me.”

To which she replied, “Oh you can schedule that stuff around school, college is more important than a doctor’s appointment.”

But what she didn’t realize is that it’s not just a check up every 6 months. More like every 2-3 weeks with various specialists, infusion days, surgeries, sick days, freak flares that lead to ER trips.

So flash forward to today, missing my art class for my cardiology appointment. Thinking about how killer my schedule was, how my body constantly ached from a Monday-Thursday schedule. And thinking about the different things I’ve encountered already at the college that are not accessible, or professors that can be ableist.

To get to my math class, I use an elevator to get to the basement, the elevator is so slow, not to mention there is almost always staff people riding up and down on it. One of them even said to me, “I just don’t see the point in taking stairs when there’s an elevator.” Or the times the elevator arrives late, only to be filled by people toting large quantities of things like soda.

    Still not too bad, better than no elevators at all.

     But the aisles of the computer lab, or any of the classrooms for that matter, most of them you could not fit a wheelchair through, even sometimes I struggle getting into my seat and I just have a cane.

     But then I go to the 2nd floor for Comm 111, not only do I have to deal with gawking nursing students who look like they’re unraveling some medical mystery in their head and trying to figure out my life story, but the actual classroom: stairs. Only stairs. In order to get into any seats, which are all on their individual step, you would have to be able to walk.

    Do they just put wheelchair users in a more accessible classroom for Communications class? What would they do if someone got to their classroom and physically couldn’t get in? Shouldn’t education be accessible for all?

    It’s little things. That while seem insignificant to many, to those with disabilities, these stair cases can feel like a mountain.

    I see far too often that places claim to be accessible because they have a ramp. But I have so many friends who will tell you first hand that a ramp does not mean accessible. Often times they are too steep, even too slim to fit a wheelchair through.

    There was a time when I would not have thought twice, I would have let it go because it didn’t affect me, but it affects me, and it affects so many of my friends and family. It affects people everywhere and everyday. It may seem like a silly complaint, but it’s hard to sit back and look at all the inaccessible things and think about the professor smiling and saying “Quite a challenge, huh?” Accessibility should not be a challenge.

Having issues with inaccessibility somewhere and want to share your story?

Email me at gshockey@wvup.edu