Cosplaying with a Chronic Illness

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[Image shows three spoons laying on a laptop keyboard. Overlaid is a clipart of torn white notebook paper with a red paper clip. On the paper in black text reads “Cosplaying with a Chronic Illness” below the text is the black and red “X” Emblem for Xavier’s School for Gifted Youngsters from X-Men. At the bottom of the photo in red text is the URL for Thee Crohnie Grace Blog]

This past Sunday, I skipped my usual LARPing adventure for a new adventure which was the River City Comic Con, a convention I had been looking into since back in March. I had been planning for months to attend in my 90s Jean Grey costume. As some of you know, I’ve been obsessed with X-Men since I was a kid. And once I became sick, in the 4th grade, it became my escape mechanism. Even now I find myself wishing I was Jean Grey sometimes because despite the dramatic life she led, I still found her to be strong and able to take on anything. So the first time I adorned my cosplay outfit, put on my wig and took photos outside of the mansion where my aunt (who’s a nun) lives in NY, I felt like I could do anything.

But come Sunday when it came time for the Con to start, I woke up at 7am puking up my guts, despite not eating anything, since typically I only get sick after eating food. Then woke up at 10am with my heart rate at 165bpm. At that moment I was starting to think I would not make it to the con then.

I waited til about 12:30, upon resting, getting some fluids in me and my medicine, I had gotten my resting heart rate down to 95 and standing to 120, which was tolerable enough for me to throw on my costume, wig, do my makeup, and make my way to the con! I had decided not to take my cane because I was already having a hard time feeling like Jean Grey with the tube in my face, so I decided to push through and handle the consequences later.

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[Image shows me in a yellow and blue jump suit from the waist up, in a natural red long haired wig, and a blue head band with a sewed on red “gem”. I’m not wearing my glasses and have my NJ tube.]

I nervously made my way to the con, I knew some of the people I knew were going to be there but I had made the decision to not wear my glasses leading to a lot of blurry people. Within a few minutes of walking around in the vendor area I had run into a few of the girls I LARP with who were dressed as Homestuck characters.

I followed them around for a while, marveling at the amazing costumes and cosplays surrounding me. There was a Sans, Velma, tons of Harley Quinns, a handful of Ghostbusters, an adorable little Rey, and a Max Caulfield from my favourite game “Life is Strange” (serious feels for that game).

I eventually  found my friend Ryan who was there with his wife and daughter who was doing a great Romona Flowers cosplay. We chatted a bit, before I went in search of something to drink because the heat was starting to get to me.

They didn’t have any water that I could find but I found some Sprite which perked me up after a few sips. By that time it was time for the costume contest, which I was wanting to take place in but had been extremely nervous about.

I remember someone coming up to me as they announced it and asking me if my tube was part of my costume, then when I said no, asking what it was, so as I walked outside to the gazebo for the costume contest, I explained to the person about my feeding tube.

Once we got out there I chatted with a few people who approached me for a picture, a guy dressed as Captain America with a super awesome shield, a guy dressed as a Ghostbuster who had previously dressed as 90s Cyclops and the girl dressed as Rey.

They had everyone line up in single file, go up and introduce themselves and say who they were dressed as, and then make their way to the other side. I watched anxiously as the line moved. I have spoken to larger crowds, I used to be in Speech and Debate, but for some reason I was much more anxious, and the heat certainly didn’t help matters.

Before I knew it, it was my turn, I felt like I rambled because I was so nervous, this being my first con, though I should be used to dressing up in costumes with LARPing. I said my name, introduced my 90’s Jean Grey self and quickly made my way to the other side. I checked my heart rate which was 173 and all I could think was “If I pass out and have to go to an ER, this is gonna be pretty awkward.”

After everyone went they had all the contestants come back up, and took some photos, I hung out in the back with the tall Ghostbuster guy and hoped my heart rate would lower and that I could sit down soon, while anxiously awaiting the judges the decisions. The judges were Mid Ohio Valley Superman, West Virginia’s Wonder Woman, and Bunny Bombshell!

Soon they announced the winners, for best craftsmanship was the tall Ghostbuster dude, for best child they chose little Rey, for best adult (I think that was the category) a spot on Harley Quinn from Suicide Squad, and for most unique: me. I was extremely shocked but super happy. I had gotten 25$ in Con-Cash, and a cute photo frame with a paper showing what I had won at River City Comic Con.

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[Image shows a blue fish with a yellow cape and an “RC” emblem. Overtop reads “River City Comic Con 2016” and below reads “Costume Contest Winner Most Original”]

Afterwards we all got our photos together and with the judges.

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[Image shows a gazebo with trees behind it. On the gazebo from left to right are a guy fully decked out in a Ghost Buster outfit, Mid Ohio Valley Superman with little Rey in front of him, Bunny Bombshell as Valkyrie, West Virginia’s Wonder Woman as Super Girl, and then me in my Jean Grey costume.]

I ended up staying outside a bit longer chatting with Wonder Woman and two other girls I knew from high school. Soon though I went back inside, I sat down for a bit and hoped my heart rate would go down. It was only around 2:3o, I hadn’t been there too long. I ended up getting a Team Mystic shirt and then leaving to go home and start a feeding and hydrate more.

For my first con I was so thrilled, I cannot wait to do more cons, and do more cosplays. I’ve got a long list in my head. I want to do an Arya Stark cosplay since everyone tells me I look like Maisie Williams. It was really a wonderful experience and I cannot wait to do it again.

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[Image shows me in front of a garden in between pillars. I have my hands out stretched touching the pillar and bricks. I’m in my yellow and blue jump suit and wig with the head piece.]

 

 

Running for a Cause

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[Image shows 3 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 “Running for a Cause” with a clip art of blue. white, and green sneakers. Below in small red text is the URL for Thee Crohnie Grace Blog]

My mom has always been my biggest supporter and advocator. I couldn’t ask for someone better. She’s been advocating for me since I was 8, and even now at 19 she continues to advocate and help me raise awareness for my illnesses.

The last couple months my mom has been organizing a group for a 5K involving inflatable obstacles. Including both family and friends, they organized the group, designed T-Shirts, organized a yard sale to make the money for the t-shirts, and each and every one of them finished the race.

Last Saturday they adorned their shirts and got ready for the race. For a lot of them it was their first 5K. It was a big accomplishment for my mom, for her it was her first.

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[Top image shows the entire group. From left to right: Tall man in a green tank top and compression shorts and a mustache, that is Marcia’s boyfriend, then Marcia standing in shorts and the purple team shirt with the image of a knight with a heart shaped shield featuring purple, green, and zebra ribbons on it. Then is another lady in her team shirt adjusting her sunglasses, my mom’s friend Bri crouching, Henry standing behind her, my mom with her hands on Bri’s shoulders with sunglasses and her hair braided, then there is my step grandfather Jeff in the back in a white tank top, then my step sister Shelby in front of him in a team shirt, and her hair in braids as well, then beside her in a striped tank top and glasses is my brother, and behind him is my step father, Christopher in a black tank top. Beside my brother is my small step brother, Hyland in a team shirt tucked into his long black shirts, with their arms around Hyland is my step Aunt Jennifer in a black tank top. Besides her is her daughter, Hannah, also in a team shirt. Slightly in front of her is my step grandmother Diane in a pink tank top that I think says “For the Love is the Run” but I could be wrong, then with one arm around his grandmother is my cousin Harlan in a team shirt and sunglasses. The three images below are the same photo just upclose and split up. At the top of the photo reads in pale transparent purple text that says “Believe in Yourself”]

We got up at 6am and left by 7am since the race was not in our town. We got there around 9:30, though the race didn’t start til 11. Everyone had to check in, get their numbers, and stretch out before they ran.

The first obstacle was a bunch of inflatable stairs which led to a slide. I was in charge of taking photos since running/walking for long distances just isn’t really an option for me. Especially considering I started the day by waking up to a heart rate of 160.

After they made it off the first obstacle, then they had to do some running through the woods before making it back to the outside and back onto obstacles. Things such as inflatable wrecking balls, using a rope to climb over walls, making their way through mini mazes and much much more.

I waited at the finish line to see everyone and try to snap some photos of them sliding past the finish line. The first couple to cross of our group was Hannah, Harlan and Hyland (my cousins and brother), followed by my brother, Ross, then Henry, then Bri, then Shelby, Jeff, Diane, and Jennifer. Then the rest of them, and my mom.

My mom slid down the slide and then rolled over, both happy and exhausted, before getting back up and excitedly running to get her shirt and medal for finishing the race.

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[Image shows my mom running in our purple shirts, her hair braided, wearing sunglasses, and her hand wrapped in the sleeve that someone else cut off their shirt. It reads “Every Accomplishment Starts with the Decision to TRY”]

Everyone headed to go get water and relax a bit before we went home. They ran this race with shirts that on the back gave links to CCFA, G-Pact, and Hypermobility.Org to raise awareness for Crohn’s, Gastroparesis and EDS. They called themselves “Knights of Thee Lady Grace” based off the fact that I call myself Thee Lady, and also because of my LARPing.

I was so proud of everyone! And it looked like a ton of fun, I would have loved to give those inflatables a try. I’m hoping to one day be able to cross running a 5K off my list once I get healthy enough. But considering my heart rate just standing was higher than everyone who had ran the race, that may be a while! But it was incredible and I was so proud of all of them for doing it and not giving up. They really are amazing, I love  them all. I could not ask for a better set of Knights to represent me.

 

   Thank you to everyone who ran in the race and wore a t-shirt to raise awareness. You all are just awesome. Thank you. And can’t wait to see you all at the next 5K 😉

 

Grace vs. the NJ Tube

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[Image shows three spoons on a laptop keyboard. Overlaid is a clipart of torn white notebook paper with a red paper clip. On the paper reads in black text “Grace vs. the NJ Tube” with a green awareness ribbon below it. At the bottom of the banner is the URL for theecrohniegrace blog.]

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

   Just gotta count to ten and start again. 🙂

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

Just an Update

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[Image shows three spoons on a laptop keyboard. Overlaid is a clipart of white notebook paper with a red paper clip. On it is a red silhouette of a butterfly and in black text below says “Just an Update”. At the bottom of the banner in red text is the URL for TheeCrohnieGrace Blog]

A while back I said I would give an update, seeing as how I had therapy on Monday, had to get labwork this week, and figure out the schedule for my NJ tube replacement. Alas, I’ve been in a bit of a creative rut lately seeing how I have been without my normal nutrition routine. Just recently have I been making more of an effort to write, bake, craft, etc. Doing the things that make me happy. So without further hesitation, here’s how my week has gone.

Monday I went to therapy, where we worked more with DBT (Dialectical Behavioral Therapy) handouts and worksheets. This time talking about how to obtain objectives skillfully.

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[Image shows a worksheet that reads “Interpersonal Effectiveness Handout 3. Overview: Obtaining Objectives Skillfully.” Including 5 boxes. The first saying, “Clarifying Priorities. How Important Is: Getting What You Want/Obtaining Your Goal? Keeping the relationship? Maintaining your self-respect?” The next box says “Objective Effectiveness: DEAR MAN. Be effective in asserting your rights and wishes.” The 3rd box says, “Relationship Effectiveness: Give. Act in such a way that you maintain positive relationships and that others feel good about themselves and about you.” The 4th reads, “Self-Respect Effectiveness: FAST. Act in such a way that you keep your self respect.” And the last box reads “Factors to Consider. Decide how firm or intense you want to be in asking for something or saying no.”

We started with her saying that you always have to ask yourself certain questions when it comes down to “Objectives Effectiveness”. Questions like “What do I want from this interaction?” And “What will work to get those results?”

We discussed the acronym in the worksheets called DEAR MAN, which teaches you the steps and skills to be effective. Describe, Express, Assert, Reinforce, (Stay) Mindful, Appear Confident, and Negotiate.

These were meant to be used to be more tactful in verbally expressing issues or problems I am facing and working towards being able to resolve those on my own without getting overwhelmed. I haven’t really been able to put them to use yet because I’ve just been in a bit of a rut so I haven’t been as productive in expressing feelings in a positive manner lately.

Tuesday, I had to go get labwork because I needed to get it done before I could get my NJ replaced. So my mom took me to get that done. The lady, Dawn, remembered me as she checked me in and took me back for labs. She let me know that they cannot draw labs from my port because only a RN can do that. So with that I gave her free range to try to find a decent vein. After 4 attempts and no luck, I told her I would come back tomorrow but that I had hit my limit for the day before I would cry. Still got the bruises from the attempts.

Wednesday I went back, this time with my grandma. Dawn took me back, tried on the vein she had attempted first the day before, no go. She insisted it was the only vein she could really feel but that it was just really scarred, so she tried again in the same spot, this time digging around and finally getting it. All of that for just one small vial of blood for whatever test my radiologist had ordered.

Thursday I went to the fair, already wrote about how that played out. Yesterday got photos done with my mom, baked a cake with my friend, and we tie dyed t-shirts (my hands still are purple and blue from the dye). And got my NJ tube placement time figured out.

Monday I have to be at the radiologist at 7:45am, they are going to put me under this time I believe, and honestly, I’m a bit thankful for it because admittedly the NJ placements are a bit more uncomfortable than the NG, simply cause of the hard wire they have to use to guide it from the stomach to intestine. I refused to be put under last time simply cause I had college later that day, and couldn’t afford to be loopy or sick from the anesthetics.

And that just brings us up to today, I tie dyed another shirt, and have been watching Bob’s Burgers wrapped up in my owl blanket. My heart rate has been in the 160s all day which has been making me feel crappy. Tomorrow I have to run an art contest for the LARP I do and then that will bring me to Monday. Where I will give you all another update on how my NJ tube placement went. And hopefully I will start perking up in both mood and energy once we get that back in order.

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[Image shows me in a grey and blue shirt laying on a yellow rug, from the chest up. My arm is bent and my hand is in my hair. I am on my back and my head is facing up, eyes closed. There are orbs of light on the photo and in the center in curly blue text reads “So Many Reasons to Be Happy”.]

 

 

“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.]

When it All Becomes Too Much

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[Image shows three spoons on a laptop keyboard. Overlaid is a clipart of torn white notebook paper with a red paper clip. On the paper in black text reads “When it All Becomes Too Much” and below that is a floral circle with a pink circle featuring white cursive text that reads “don’t lose hope”. At the bottom of the banner is the URL for Thee Crohnie Grace Blog]

There are some weeks when the negatives keep piling up faster than the positives can combat them. That has been the last week and a half for me. Doctors are playing phone tag, Nurses can’t seem to figure out how to access a simple port, still no nutrition or NJ tube, my primary forgot to fax lab orders to the infusion clinic, turns out the lab itself can’t draw labs from a port, so I got stuck a couple times, and on top of all the normal things that come with having various chronic illnesses… I broke a nail.

It just keeps knocking me down. The second I start to gain a little positivity, something else just knocks me back down a peg. Since having to pull my NJ tube last Monday, it’s just been a steady slope. And to be quite frank, I’m getting fed up with it, I am so tired. It’s a vicious cycle with chronic illnesses of trying to stay afloat in rough waters. No matter how many waves keep pushing you down, drowning isn’t a choice. And sometimes you will gain the upper hand, find the light and the good in all of this crap. But there are weeks, where the good seems fleeting and it’s hard to stay afloat. It would seem much easier to just give up and drown.

But I can’t lose hope.

All last week was a constant battle with my doctors. For some reason the radiologist who typically would replace my feeding tube, is not in his office for the week. So they told me the only way I could get it replaced (maybe) was by going to the ER and waiting there, getting accessed, getting labs I don’t really need, and waiting for who knows how long when they may not be able to do anything about it.

I hate the ER. I hate it more than I hate anything else. The entire environment feels judging. And after being there so many times this year, they know my face and name. Only upping the judging factor. So there was no way I was going there. Of course now that it’s been a week or so and I’m feeling the effects of no nutrition, I’m contemplating just going and getting it over with. But I basically told the doctors that it was their problem, not mine. And I wasn’t going. I was fed up.

Then comes my 3rd Entyvio infusion on Friday. The nurse couldn’t find my port, cause it’s deeper than most. (Let the record show, she is the only nurse to ever have an issue finding it.) And so when she stuck, she missed my port. She tried to push saline anyway and it burnt. I panicked and told her to stop and remove it. Rather than listening to me, she used her free hand to hold me down and told me to stop moving. And continued to dig around my chest til she could get the needle in the port well enough to draw back blood and push saline. Which still hurt from it barely being in the port.

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[Image shows me with short red hair, green glasses, puffy red face from crying. I’m wearing a white tank top with black designs and a black and white cardigan. I have a Star Wars lanyard on and white dressing and IV line tubing coming from my chest from being accessed.]

I was basically nonverbal the rest of the infusion, relying on my phone for communication and also using my grounding app to try to calm down enough to speak. A nice lady with purple hair came over when she heard me crying and upset and gave me a purple bracelet. It had little stick figures in dresses made out of purple awareness ribbons and said “We’re In This Together”. It put things in prospective for me, and gave me the push I needed to calm down despite the nurse making a rude comment about how I was on my phone the entire time, and then trying to hug me afterwards. I do not like being touched when I’m upset, so this only upset me more.

Once I got home, I was greeted by my puppy, and spent time on the porch with her while calming down.

[Image 1 on the left shows me on the porch with a forced smile and my yorkie on my lap. Image 2 on the right shows a corner of my garden where some of my flowers were starting to bloom, they are purple and on a long stalk.]

The same stuff has continued, they forgot to send my labs to the clinic so my Doctor called and said I could go on Tuesday (today). Still no word on an NJ tube. I have been trying to eat little things here and there but most of it still comes up. And it’s incredibly frustrating because my grandma still tries to get me to eat. And even when I say no because I’m not hungry or nauseated, she pushes it. I get she is worried but it drives me insane.

To be honest, almost everyone and everything is driving me insane this week. I can’t think of many people who haven’t made me want to bang my head off of a wall. I’m just overwhelmed to the brim with so much and people keep piling on. And it may not even be something they mean to. I just am frustrated and bitter. I’m tired.

I’m fighting a losing fight it seems. Where I wrinkle my nose in efforts to push back tears every couple of minutes. I’m just at my wits end with it all. I want so badly to throw in the towel and say “Screw this. Screw all of this. I am so done.” I’ve fought long enough, right? It’s good enough? Can’t I just get a single goddamn break?

But I think of the woman at the clinic, and look down at the bracelet she gave me and remember I’m not the only one fighting. I’m not alone. And that’s worth fighting for. Even if I’m not fighting this fight for me, I’m fighting it for someone. I think to myself there are so many reasons to be happy and I can always find some reason to make me feel happy that I am alive. I think of all that I have overcome, things I NEVER thought I would be able to do, but I did. I think of all the good I have done, the messages I get flooding my inbox about how I have inspired them, how I’ve made them look more positive at their own life, how I’ve given them the courage and the strength to overcome their own struggles.

I think of all the people who have told me, “I’m really glad I found your blog. I never knew anyone in my life who I could relate too.” or “You’re incredibly inspirational and it makes the loneliness a little less intense. Thank you.”

I think of all the friends I wouldn’t have today if it weren’t for illnesses that connected us online. I think of all the lives I may have an impact on around me, online, people I’ve never met who I have made their day a little brighter. And I start to smile again, my voice starts to gain it’s chime back, my eyes light back up and I sit up, grab my laptop, and remember that I have so much to be thankful for, so much going for me, and that I am not going to give up, I’ve still got a lot of fight in me.