Instagram for the Chronically Ill: #SpoonieLivingApp

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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 is a small clipart of a minimalistic camera with black text that reads “Instagram for the Chronically Ill: #SpoonieLivingApp” and below that in small red text is the URL for Thee Crohnie Grace Blog]

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

College, NJ Tubes, and Life

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[Image shows 3 spoons on a laptop background. Overlaid is a clipart of torn white notebook paper with a red clip art. In red text reads “College, NJ Tubes, and Life with a red checkmark. Below is the URL for Thee Crohnie Grace Blog.]

As you all know my life has been a bit hectic, between cardio problems, port problems, NJ problems… basically a lot of health problems, on top of moving out and starting back up to college.

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[Image shows me sitting in front of my door at the apartment, in my blue shirt with three holes in the front, I have my make up on and my feeding tube and green and black glasses.]

Monday was my first day back, luckily with only two classes, math and then biology. Starting my day at 9:30am, not my favorite thing in the world. Especially when my bed mattress is hard as a board.

I was a bit anxious about math, because it’s been a long time since I took a math class. And I also always have anxiety about being the “Sick Kid”, I don’t want teachers to think that because I am sick I will fall behind or not give it my all. I am an overachiever which is both a pro and a con for me, the stress can make me sick, but I graduated honors.

My math professor was really great though. He is from Germany, and acknowledged right off the back that math is hard and that asking for help is perfectly okay and nobody should feel bad for not getting it the first time around.

I talked to him about my health issues, cause I like to let my teachers know everything going on in my life in hopes that they will be understanding if something happens. He thought my feeding tube was an oxygen tube at first, which oddly enough isn’t the first time someone thought it was oxygen which I find weird cause they look nothing alike, but feeding tubes aren’t seen too often in the media or television like oxygen tubes are.

After Math I had til 5 that night before Biology so I just went back home and worked on math until then, taking notes so that if I come up on anything that I struggle with I have the notes to go over and refresh my memory. Bio was easy, the professor was really smart and nice. He is a microbiologist, but he is able to simplify biology and relate it to every day things. Which was nice.

Tuesday I had math again, and then my communications class, which I had to leave early for my echocardiogram.

I got labwork and then went back and waited for the radiologist, we had to take off the heart monitor I was already wearing. (I still haven’t put it back on actually, the adhesives break out my skin really bad so I’ve been avoiding it.)  It took a lot longer than I expected.

There was no noticeable problems with my heart luckily, minus the tachycardia and blood pressure. So I will still be waiting for my cardiologist appointment to do other tests. After that I had to go back to my Bio lab class, that I was a tad late for. But the Professor is really understanding and everyone was really nice.

Wednesday was my appointment with the radiologist, Dr. Kirkland, to replace my NJ tube and check my port. I was anxious about this due to the last time and the issues we had with my narrowing of my nasal passage from scar tissue.

But luckily this time I was in a much calmer mood, I was not as overwhelmed, and since I had to be at the college later today, I was not going to let them give me any sedation so that I could still function later. They were pleasantly surprised to see me calm and collected and chipper. They remembered me from the last two times I had been there, once as a confident and optimistic “I got this” girl, and the other as the meltdown mess.

I took out my old NJ tube and had them bring me the heavier and thicker tube. They had tried to do it the last time, but due to the narrowing it was impossible, but this time I decided to try it on my right side instead of my left.

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[Image shows a white tube with purple connectors wrapped up and the end is a heavy clear thing with metal weights]

I quickly pushed the tube down, with ease this time, and then we went back to the OR room to guide the tube from the stomach to the jejunal under X-Ray, and also to handle some port issues.

This tube was easier to guide than in the past which was nice. We got it quickly into the jejunal and were able to remove the wire and tape it down. The wire is definitely the worst part about the tube.

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[Image shows me in a hospital room with my new NJ tube, with a tie dyed t-shirt and blue cardigan, no makeup.]

Once the tube was placed, then we decided to take a look at my port. He said it was “highly unlikely” that a port flips entirely. So we went under x-ray and tried to access, it looked fine, but once they stuck me, it struck hard plastic and was unable to go any further, proving that my port had, in fact, flipped completely and would need to be replaced.

So then I was able to go home, I was exhausted though and decided not to go to math class since I was already ahead of my math class anyway. So I went home to sleep a bit before my next classes.

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[Image shows me laying down without glasses and with my blue and white owl blanket, no make up]

The rest of the week was long and boring with college which kept me very busy. Luckily the weekend came quickly. I got to go to a local concert for a band that my boyfriend’s friends plays in. Got to do engagement photos for an awesome couple and had some downtime to myself for once. image6.JPEG

[Image shows me with a forest background, there’s a white triangle with crystals, and an eclipse. I’m in a black dress, with black leggings with a crescent moon on one knee and a pentacle on the other, I have a cardigan on that has the evil eye and Hamsa in black and white. I have my makeup done and my NJ tube hooked up and green/black glasses.]

 

 

 

 

 

 

Health Update: ER Trip and Entyvio Round #4

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[Image shows 3 spoons on a laptop keyboard. Overlaid is clipart of white notebook paper with a red paper clip. On the paper in black text reads “Health Update: ER Trip and Entyvio Round #4”. At the bottom of the banner in small red text is the url for Thee Crohnie Grace Blog.]

Last Sunday, I took a trip out of town with some friends for the LARP I do. My tube had been clogged for a while, but wasn’t a huge deal, I had already scheduled to get it replaced on the 17th. But once we got to our destination I noticed something weird. At first I thought it was just stomach acid backing up into the tube, and that maybe my NJ was just forced into my stomach, I just went to the bathroom and rinsed it out; normally I would have flushed it but since it was clogged or kinked I couldn’t push fluids.

Soon though I discovered that it wasn’t stomach acid backing up, it was feces. I sent a message to my mom who then called my GI Nurse. I was just going to pull the tube and continue my event with my friends, but my nurse told me not to pull it due to the risk of getting stool into my stomach and getting E. Coli. Instead she simply just told me to go to the ER so that they could try to push enzymes to unclog it, clean it out and then pull it if need be.

I was just going to wait til I got home from my trip to go, I figured there wasn’t a huge rush or emergency really, so long as I didn’t try to pull it on my own, the tube wasn’t going anywhere. My traveling companions though were worried, and insisted we go home anyway, which while extremely kind of them I couldn’t help but feel as though I had messed up our trip over what seemed like a small problem to me.

They assured me though they didn’t care and just wanted to make sure I was okay and taken care of. Insisting on updates when I got to the ER and whatnot. So once we made it home, my mom came by and picked me up to take me to the ER.

What I imagined would be a long wait was not at all, they took my right back and had a doctor there to see me within minutes. He called the pharmacy and ordered pancreatic enzymes and ordered a X-Ray to be done to see where the tube was.

They also made note of the fact I was really tachycardic and had a low BP so they wanted to go ahead and start me on fluids anyway. I pointed out that I had a port, and they went to feel for it. The nurse said she could only feel one ball, when she was supposed to be able to feel three. She brought in two other nurses to feel, they all agreed the port was too tilted and possibly flipped and could not be accessed and that an IV would be needed instead.

For a good while I had gotten extremely good about IVs, I let them stick me 5-6 times and would not cry or get upset. But since my previous Entyvio infusion where the nurse pinned me down when I told her to “Stop” because she had missed my port and was digging around with the needle in my chest which hurt, I had a case of what me and a few other chronically ill friends call “Medical PTSD”.

I found a song to listen to and squeezed my mom’s hand as the nurse tried to find a vein, in my least favorite place: my hand. She got the vein but there was no blood return, which made me panic when she wanted to push fluids. I went into meltdown mode featuring me crying and flapping my hands around. Luckily, my mom advocated for me and said, “When she says stop, we stop until she calms back down.” And the nurse was extremely patient with me until I relaxed and settled down and she was able to push fluids through it with minimal pain.

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[Image shows my hand/wrist where an IV has been placed and taped down.]

They started me on fluids and waited for the results on the X-Ray and to hear back from Pharmacy on the enzymes. The X-Ray showed that the NJ tube was still properly placed. So they got the Enzymes and started flushing out my tube. It flushed easily, and he told me he thought the clog was gone and that since it was flushing good now that he wouldn’t remove the tube and wait til my appointment with the radiologist to get it replaced, since the tube has caused a bunch of issues.

They wanted me to stay still though to get fluids for the tachycardia and low blood pressure. So I waited patiently for the bag to empty.

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[Image shows a bunch of utensils in the ER room, including a bag of fluids hanging up, a monitor and a bunch of other things.]

We were free to leave afterwards. Of course with the port being unusable, I had to contact my doctors to contact the surgeon who placed it so that they can come up with a plan to either flip it back over or replace it. They have yet to get back to me with a date for that. Which meant that when Friday came around for my Entyvio infusion, I had to do it all over again.

My Grandma took me to my Entyvio infusion. The same nurse I had this time was, apparently, the same nurse who messed up my port and led to my panic over needles once more. I had been hydrating all night and day through my NJ tube so that finding a vein would be easier. I had brought headphones so I could listen to something to distract myself as she tried to start an IV. Despite being awful at accessing a port, she did an okay job at getting my IV started.

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[Image shows my arm, IV accessed in the crease of my arm and taped down, and then wrapped to my wrist featuring the top of my crystal tattoo]

Luckily the Entyvio infusion is a short one, the longest part was just waiting for the pharmacy to send the medicine. I finally got a call back from my doctor whilst at my infusion. She said that she would call my mom to schedule me to come up to Cinci, cause they would have to have VAT try to access my port, and then if not possible at all, fix it or replace it and then they would want me to stay a day or two, like they had me do the first time it was placed.

Next week I start college, I also have an Echo, get my NJ tube replaced, and hopefully will have a more solid plan on what is going to happen with my port. Never a dull moment.

Moving Out

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[Image shows three spoons on a laptop keyboard. Overlaid is a clipart or torn white notebook paper with a red paper clip. On the paper in black text reads “Moving Out” with a small clipart of a house with a blue roof. Beneath the paper is the url for Thee Crohnie Grace is dark red text.]

Weeks ago I sat outside on a bench catching pokemon with my friend and talking about how I really wanted to move out and feel more like an adult, take that next step to independence. I mostly was just rambling, not super serious, but he took the idea and ran with it.

A week later he was messaging me showing me places he and his boyfriend were looking at and including my friend, Evan, and his friend Logan. I was extremely anxious, they seemed quite serious about it, and honestly I was just looking for an excuse to not move out.

But then he showed me this really nice apartment, not very accessible by no means, but there was 4  bedrooms, 2 and 1/2 bath, very spacious. The neighborhood was really nice and friendly, there were two med students, an old veteran, and a nice elderly couple.

Before I knew it I was agreeing. I was extremely anxious. As a medically complex person, who deeply relies on her mom and grandma for transport and medical care, moving out on my own came with a world of problems that the others didn’t have to think about.

For example, none of them would really know what to do in the case of me having a medical emergency. If my ostomy leaked, I had my grandma to help me clean up, and calm me down. I won’t have that. If I need to go to the emergency room, I may be home alone and have to call my grandma. On bad days, I may not be able to make it up the stairs to even get to my room.

I won’t have someone to remind me to take my medication, to start a feed, to try  to eat, to drink, etc. But I wanted to feel independent, to have my own place, to accomplish that much, even if it doesn’t work out in the long run.

Regardless, Friday we went to talk to the landlord to fill out papers for our place. My mom, step father, and brother helped me move my stuff in and my brother helped put together the futons for the living room. Within a day, I was moved in, and it felt good.

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[Images shows a collage of photos. Starting at the top left: First image shows my bed with blue, grey and yellow covers, pillow, and blankets. Including a pillow that says “Wild at Heart”.  Second image shows the dining room, there is a stone fireplace, a nice wooden table with four chairs, and in the center of the table is a small potted plant with cacti and succulents. The third image shows my brother laying on just the futon mattress with two pillows whilst playing on his phone. In the second row, starting to the left is a cabinet filled with red dishes and cups and white bowls. The second image on the second row shows an end table with a lamp and says in blue text “Say yes to new adventures”. The last image in that row is double glass doors from the back patio. In the third row on the left is the kitchen, including a dishwasher, sink, lots of cabinets and a oven/stove. Then a photo of the bathroom before we got a shower curtain, featuring the pinkish tan bathtub and toilet, and the cream marbled sink. And the final photo shows the windows in the living room with Micheal standing in the edge.]

The boys are still working on moving in their stuff. I haven’t stayed there as often as they have though despite being mostly moved in. Since the majority of my medical stuff is still at my grandma’s. Not to mention the doctors appointments, and the recent ER visit which I will cover in another post.

There will be a lot of new challenged with moving out, there’s still a lot I have to learn to do on my own, but I always know that if I need help or someone to lean on that my family will always be there. I have a great support system, with out them none of this would be possible.

 

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[Image shows me wrapped up in a grey, blue, yellow and white blanket, laying my head on my pillow that says “Wild at Heart”]

 

What Goes Up Must Come Down: Orthostatic Blood Pressure and Tachycardia (Health Update)

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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 “What Goes Up Must Come Down: Orthostatic Blood Pressure and Tachycardia (Health Update)” and below a red clipart heart with the lines of a heart monitor. At the bottom of the banner is the URL for theecrohniegrace blog]

For a while now I’ve had issues with standing and being dizzy, but I wrote it off because I assumed everyone got dizzy when they stand up. My mom told me I needed to stand up more slowly, that was all.

So for a while I just ignored it until more recently, when the dizziness started to be accompanied with light headedness, feeling like the air had been taken from my lungs and even chest pain at times, accompanied with a heart rate anywhere from 130-170.

[Image on the left shows an open app in dark blue and a light blueish grey. It reads “Heart Rate Monday, Jul 25, 2016 at 10:55 AM” it shows the ups and downs of a heart monitor and then below reads “160 BMP” tagged with “standing”. On the right is the same open app but reads “Heart Rate Wednesday, Jul 27, 2016, 6:44pm” and shows the ups and downs of a heart rate monitor and then below reads “172 BPM” tagged with “Standing”]

Finally after a week or so of my heart rate constantly spiking to 170 when I stood up, and spending the majority of the week laying in bed, I decided to mention it to my doctor. So she had me come in the next day. Once I got there she tested my heart rate laying down and blood pressure, it was 86bpm and I can’t remember the blood pressure. So then she had me sit up, checked blood pressure and heart rate again, this time 97bpm and about the same blood pressure, so then she had me stand, my heart rate spiked to 145bpm and blood pressure dropped.

She had me lay back down and began to talk about orthostatic pressure, which is your blood pressure when you are standing. She explained it as that when I stood up, my blood pressure would drop, so I wasn’t getting enough blood to my brain, which caused my heart to go into hyperdrive and pump faster to try to get the blood up, hence the dizziness which was relieved by laying down. She compared it to a half filled bottle of water, if you lay the bottle down, the water can still touch the cap, versus if you sit the bottle up, the water all goes to the bottom. She mentioned Postural Orthostatic Tachycardia Syndrome, basically what she described, common with EDS, but she wanted to run more tests to be safe.

So she called in a nurse to do an EKG while I was there, and so she could order a chest x-ray, labwork, an echo and a heart monitor for me to wear for a month.

 

[Image on the left shows my lower half in a doctors office, you can see a bit of a green/blue/yellow tie dyed shirt pulled up and a bundle of wires coming out from under being held in my hand. The image on the right shows my legs and a device with a bunch of wires coming from it and a few leading down to my ankles while I lay down.]

The EKG was normal, so was my labs, and the chest x-ray (minus my slightly tilted port). So she told me she would schedule me an appointment with a local cardiologist who would run a tilt table test and any other tests they felt fit.

In the meantime I was to wait for my heart monitor to come in, much like the one attached for the EKG, that I would wear up to my cardiologist appointment.

In less than a week the heart monitor came in and with only a little bit of a struggle getting it started.

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[Image shows a toolbox like black box with some batters and a white paper that reads “CardioNet” with instructions on how to set up the heart monitor.]

The white wire goes on the left, 3 fingers below the collar bone, and the red wire on the right below my breast. Every time I feel symptoms I hold down the middle button on a walkie talkie like thing and plug in the symptoms I feel along with the level of activity. I will be doing this til the 30th when I see the cardiologist, along with an echo on the 16th and I also have to get my NJ tube replaced again on the 17th due to either a clog or a kink, I’m not sure.

 

My health feels like a hydra sometimes, you cut off one head and two more grow back. Nevertheless, not going to let it slow me down. I start my second year of college on the 15th, and am moving out and into an apartment with some friends this weekend. The world keeps turning and life goes on!