NJ Tube Round 2

After a few weeks with little to no nutrition since I lost my NJ tube to kidney stones, finally got rescheduled to get it replaced yesterday. This time we were able to get it replaced locally.

Dr. Kirkland, a radiologist near me, along with a team of nurses and other radiologists came in and talked to me. They thought they were going to sedate me or give me at least nerve medication to relax me, but nope.

I told them, “I can put it down to the stomach myself and you can do it from there.” So I placed the NJ into my stomach and to the duodenum and then the radiologist suggested I get up and walk around and see if it moves on its own.

Then he just disappeared and went off somewhere. I came out of the bathroom utterly confused as the one nurse told me he was going to go find Dr. Kirkland.

We sat and waited, he finally came back and didn’t really say where he went. But we went back and the X-Ray showed it had just coiled up in my stomach and hadn’t moved into the jejunum. So he got out a wire and pulled out the NJ a bit and then inserted a wire to guide it into the jejunum.

Despite the pressure from the wire it wasn’t unbearable. It only took a few minutes then to get it into the right place.

One that was done, we taped it into place and then I was free to head home and follow up with my GI and Primary.

Luckily we got out in a timely matter and I was able to go to college from 4-10. I was exhausted and the tape they gave me didn’t stick very well which made my nose and throat irritated from the tube moving back and forth.

By the time I got home I was already extremely fed up with the tube and had contemplated just ripping it out and saying to hell with it all. After a good cry, and a hot bath, I felt better though.

I’m now running my feed at a rate of 31ml/hr and trying to work up slowly as to not make myself sick, even though I’m pretty sure I only got sick last time because of the aforementioned kidney stones.

Now to spend the week doing school work and catching up, contacting doctors, scheduling labwork, and getting in contact with my doctors about my 23andme results which I got interpreted by Promethease. So I will probably do a post about that at some point!



Chronically Fabulous Easter

Since my doctors had postponed my NJ tube til Monday, I got to go with family on our annual trip to Dunkirk to visit our Aunt Rita who is a nun. The drive was about 5 hours or so and between my two step siblings, our massive dog, and luggage there was little room left for a comfortable ride for anyone, let alone someone who is already dealing with chronic pain. Never the less, the drive was worth it.

That night we went out to dinner with the whole family (A total of 11 of us) and I had a panic attack, there was a lot going on and I just went into a sensory overload between all the questions and noise. I calmed myself down though and was able to leave the bathroom after a while.

Then once our step brother went to sleep, we (Step sister, 2 cousins and myself) left to go see Superman vs Batman which was actually alright. A little dramatic for my taste since I’m used to Marvel movies and their humor and jesting, but pretty good since I am not a huge DC fan.

The next day we had the whole day to do whatever so we first went down to the pier to look out at the lake and do some antique shopping (a tradition of ours).

We grabbed lunch and then went back to visit with Aunt Rita for a few hours and hang out as a family. My step brother, Hyland, wanted to find easter eggs but most of us were too old and too tired to care to hunt for Easter eggs so we hid them for him and let him go in search of them. We were able to convince my step sister to go as well by lying and saying we hid $20 in one of the eggs. Harlan (my cousin) and I hid them all over the place by the house, I’m pretty sure if he hadn’t have helped out, they never would have found them all!

Next we decided to do some photos of my cosplay because St. Columban’s made an excellent X-Mansion for my Jean Grey costume, as well as there was a lot of nice scenery on the beach as well. I handed over my camera to Mom and let her take the photos for a while, since it is usually me behind the camera.

We walked all around and finally ended up on the beach where I ran into my step cousin, Harlan, and my stepbrother, Hyland, working on building a bridge over a small creek that had formed on the beach. The logs weren’t the sturdiest but I really wanted to walk across like how I used to do the balance beam in gymnastics as kid, sadly I’m not quite as graceful as I used to be so I needed some help.

After that, the family ate dinner and then Harlan and I started playing Uno. We played over 50 matches of Uno as he tried to catch up with the number of wins I had. He was determined to beat me. We ended up staying up close to 1am before he finally tied with me. We decided we would do a tie breaker and then call it quits, and he managed to beat me and win the game. So we declared him Easter Weekend’s Uno Champion, but next year it will be mine haha.

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Easter Weekend Uno Champ

It was a lot of fun though, but I had to go to bed at a decent hour for Church. Instead of going to bed like I should have I stayed up and wrote in a journal where I’ve been using short stories and such to help destress me the last couple nights (a tip from my therapist) so that I am not as stressed before I go to bed. Oddly enough, it even helps with the pain to be distracted and caught up in my own little fantasies long enough to fall asleep.

Though my alarm wasn’t set to go off until 8:25 (Mass wasn’t until 9:30), due to an 8 year old I was up at 8. I got dressed and did my makeup and helped my sister with her makeup and took her photos. Everyone started packing since we were heading home after Mass and lunch with Aunt Rita.

Church was long, and despite them telling you what pages to be on, they go off script an awful lot. There is a lot of up and down and kneeling (Which my body cannot handle so I just sit and hum along). I try my best to follow along but I get distracted easily and spent a lot of Mass day dreaming.

Once it was over we went back to the cottage and put stuff back in the car, Harlan and I went down to the lake to skip rocks. Which I was awful at so he showed me how, I did alright haha. He managed to skip one a total of 9 times which seemed like an awful lot in comparison to my one or two. I sat down and watched him for a while and dug my hands into the sand cause I knew it would be a while before I would feel the sand again. There is something about the sand and waves that just make me very tranquil and nostalgic.

We left to go meet up with Aunt Rita and Sister Corona and have lunch. They are some of the nicest people I know. They’re just so friendly. And they really taught my step brother a good lesson. They handed out chocolate rabbits to everyone except my mom, and then they asked Hyland to give her his, and when he did, she surprised him with a larger chocolate rabbit and told him, “Those who give everything they have of their away, will get better things in return.” And it just really was sweet and I hope he carries that lesson. Even if you don’t get material things back, you will be a lot happier.

Once lunch was over we did a few more photos and then headed back onto the road to get home. Finally getting home around 6. This evening has been spent printing off papers for English tomorrow and getting stuff ready for school as well. Tomorrow I go for my 2nd NJ tube placement and hopefully this one lasts. This week will be a busy week catching up on my pottery class and trying to get on the ball with everything and stay focused while making sure to pace myself so I don’t get sick.

Also preparing for next month which is Feast of Fools in Maryland for Amtgard. One thing at a time though, and remembering to take the breaks I need to not overwhelm myself. I hope everyone had as good of an Easter/Spring weekend as I did! And fingers crossed tomorrow’s NJ procedure will go smoothly!




It’s Been a Busy Week

Kingdom Quals, Cosplay, Doctors Appointments, Therapy and more. It’s been a busy week!

The week started off with Kingdom of Crystal Groves Quals. I entered 3 food entries, a painting, and 2 jewelry pieces. Needless to say, some could have been better but you live and you learn and you get better and the judges were amazing and really kind with their advice and tips so I know what I can work on to improve in the future to be a better crafter and baker. Not to mention we had travelers from all over our kingdom to come and visit us. I got to see some good friends and meet new people.

I pushed myself a bit harder than I should’ve for being a week without real nutrition and low potassium. I started getting chest pain while I was taking photos and was approached by a few friends to tell me to sit down or go home and get help, and of course I know they do it out of love and worry. So I completely understand. I think it stems from my desire to please people and make others happy. And of course here lately with things getting -to put it flatly- worse, I have been feeling very depressed over missing amtgard and not feeling like I am doing enough. But after talking to both my primary doctor and therapist, I realize they are right and I need to take it easy until I get my health better under control.

Monday was an easy day, no classes this week for spring break, no doctors appointment, nothing. So I spent the entire day catching up on school work and downloading photos to share to the kingdom page. And I got my Jean Grey costume in the mail which really brightened my day. I recently decided I wanted to start cosplaying at comic cons either locally or within the area or even travel with some friends.

For those who don’t know me, I have been obsessed with X-Men and Jean Grey for a very long time. When I was little I would pretend my Barbies were X-Men, in the 5th grade to cope with getting sick I began to spend the majority of my time as Jean Grey, it made me feel strong and invincible. And I suppose since things have gotten bad again I have sort’ve reverted to the only somewhat decent coping mechanism I know. Regardless, it made me super happy to get to feel that sort of inner power again.

Tuesday, had my appointment with my primary doctor (Dr. Hopkins). The nurse remembered me immediately and started asking how I had been feeling since getting out of the hospital and I explained that nothing had improved and my chest pain was a problem. I weighed 82lbs and my heart rate was 140 resting. She commented that I was extremely tachycardic and needed to try to get more fluids as well as saying she was checking my potassium to see if that could also play a factor as well as the malnutrition.

We talked more and she asked how things went at Cinci in regards to talking to my doctor about EDS. I said he agreed that it does sound like it and is going to find a geneticist there who is familiar with it and go from there but he was more concerned with my other problems right now. Which brought us to the NJ tube. Which luckily they were able to find a radiologist locally who is going to replace my NJ tube for me. With that I was sent to get lab work and then went to find an easter dress with my mom and sister.

Today I went to therapy, which was really great. She was proud of me for achieving some of the goals I had set for myself and for reaching new milestones and handling them well. She gave me some new goals for our next meeting and we are going to work on social cues and such so that I can better understand and communicate more effectively and not have such a hard time talking to people and socializing. Then went out to visit with family for my cousin’s birthday.

I’ve been working on school work to catch up, scheduling appointments and such as well as learning to sign 7 Years by Lukas Graham in sign language for fun. Despite my health being fickle to say the least, I have been trying to keep a sunny disposition and stay positive which therapy has helped a lot with, so hopefully we will achieve more in regards to that.

Tomorrow I have a dentist appointment, just a cleaning though so not too bad. Then I am going out to dinner with my grandparents on my dad’s side because I missed my grandmother’s birthday while I was in the hospital and felt guilty so I wanted to make it up to her.

It has been an exhausting week and hopefully things will start to greatly improve once I can get my nutrition levels up, and hopefully I can continue to set and achieve small goals emotionally and socially. This is my life and I have accepted that. Just gotta work around it!

Everyone Wants to Leave Their Mark

The quote from The Fault In Our Stars by John Green in regards to Hazel Grace reads,

“Almost everyone is obsessed with leaving a mark upon the world. Bequeathing a legacy. Outlasting death. We all want to be remembered. I do, too. That’s what bothers me most, is being another unremembered casualty in the ancient and inglorious war against disease.

I want to leave a mark.

But Van Houten: The marks humans leave are too often scars.”

While the book may have a lot of faults in itself, this quote remains true. Yet still everyday people try to do something in ordered to be remembered. I can’t even say I am separate because here I am blogging, hoping that some day, long after I am gone, maybe my words will have impacted someone.

Which is why I always try to be kind. I think it is good to want to impact the world so long as you do it in a way that can really help. If you want to change the world, start with yourself.

Be a gentle, kind person, smile at strangers and tell them to have a nice day, when you see a person who looks like their day isn’t going well, compliment them on something: their shoes, shirt, makeup, hair, smile, etc. You will instantly see how they light up and their world just got a little brighter as well.

So maybe I won’t be remembered for blogging or writing, that’s fine, maybe to some lost soul I can be remembered for showing kindness in a world that so often lacks it anymore.

We are in such a hurry now a days that we often forget to tell people to have a nice day, whether it is your doctors and nurses, the server who brought you food, the check out person at the grocery store or drug store.

I don’t like to make eye contact with people, but even without the eye contact, and a sincere voice, I can see out of the corner of my eye the difference it makes, not only does it lighten up in the person but you can feel it in the air almost. The pressure of the world seems to loosen up around me when I make others smile.

So why is this important in regards to chronic illness? Well honestly this applies to most people, but I suppose another quote that can be used is you never know the battles that someone else is fighting. The server you may have told to have a nice day may be battling an illness of their own and something as small as that could have turned their day around. We never know.

I do know though that 350 million people of all ages suffer from depression. Each year, 34,000 people will die by suicide, about one death per 15 minutes.

When I was down and fighting depression whilst also working for a Hardee’s, there were comment cards that we were told to give out with each meal, while the other workers didn’t do it, I always made sure to. Even when I would come in that day after a meltdown and feeling like the world would be better off without me, I would pass them out because I wanted to make sure I was doing good enough because I felt like I wasn’t doing enough in the world and also because I was a rule follower.

But I noticed something, ever so often younger people would come into Hardee’s, I would say in their 20s or so they were some of the kindest customers ever in regards to understanding if I made a mistake or we were slow, and regardless of how well I did or mistakes I made, they always filled out the comment card and told me I had a nice smile and was sweet. And it made a world of difference in how I worked, I strived to be kind and smile at all the customers even if they were rude to me, and it was no longer because it was the rules but because a few people told me it made a difference and it made me happier.

Kindness can be like a spark, but get enough people to be kind and it can spread like a fire. Kindness may not be able to cure depression or stop suicide but Emile Durkheim said that suicide rates remained the same in certain social groups every year, it was a constant, and it was because of their lack of ties to people and community. He believed this was due to lack of social ties between people, which can be mended through kindness.

If I can save just one person  through kindness, then that is all I could ask for in this world. They don’t need to remember my name or face, nor this blog, but if one of my kind words can make even someone smile, then I feel like I have done my part in this world.cropped-blog-border.jpg

Update: Kidney Stones and Losing my NJ Tube

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Friday, I got home from Cincinnati around 7pm. They let me go as long as I got lab work the next day to make sure there were no signs of refeeding syndrome.

Refeeding syndrome is a syndrome recognized after the Holocaust when nutrition was reintroduced to victims in the holocaust who had been going without any nutrition. Basically, when the body has gone without nutrition for so long it adapts to that, so when nutrition is reintroduced sometimes the body will malfunction or reject the nutrition so instead of your vitamin levels going up gradually, they will plummet.

Friday night we started up my feeds as we were told 83ml per hour for 12 hours. Within an hour or so I woke up severely nauseated so I went into the kitchen to get Zofran, before I could get the zofran, I started throwing up in the kitchen (Luckily there was a trashcan).

We presumed it to be an isolated incident and luckily since it was just the once my tube didn’t come up, we stopped the feeds just to be safe and I went back to sleep with no problems. Woke up at 7:30am to restart feeds and try again that day.

I went to Camden Clark to get my lab work which thankfully they got on the first stick. I began getting super nauseated again but tried to ignore it because I know I needed to get that feed done. I got home luckily as the first 200ml finished up, so I unhooked so I could breathe again because when I get really nauseated I feel like I can’t breathe well, like I will take a deep breath and just throw up.

I unhooked from my feeds and ran into the bathroom and began throwing up again, not formula just stomach acid, much like the night before. My mom came in and I was upset, I asked her if I could take out my tube, to which she didn’t really reply because she knew I was just upset. So I composed myself and got up and went and took some zofran, and I noticed a pain I had about two weeks ago had began to return so I tried to take the tramadol they had given me for that.

I hoped I could keep down the medicine long enough to take effect. I laid back down in bed with my cat and started crying. I had been very emotional the last couple days and still am over things, just how overwhelming it can be to constantly be sick and not get a moment of relief.

A few minutes passed and I got up and sprinted to my bathroom again and began puking continuously. The pain got worse so I took the trash can next to my bed and laid in bed while hanging my head over the edge to throw up. I realized my tube was starting to feel like it was getting kinked up, I could feel the tube bunching up in the back of my throat, but I couldn’t stop myself throwing up. It just kept coming up both vomit and the tube.

With my NG tube, when I threw up the tube came up easily, I would throw it up in a swift heave and then just have to pull it out from my nose since it would still be in the nasal passage. With the NJ, though, it got tangled up in my throat. I started coughing and throwing up all at once and I couldn’t breathe. I started to panic a little before the tangled up tube ended up in the back of my mouth. At this point I knew there was nothing I could do to save it, and as I continued to choke on it, I pulled off the deoderm on my face and began pulling out the tube. As I pulled it slowly unkinked itself, but I knew there was no point in trying to put it back down because it would have to be completely replaced by a radiologist to get it back into the jejunal.

The pain had gotten to the unbearable point and I was still throwing up and now crying over the frustration of losing my NJ tube. I called my mom and let her know and then went to get my step dad and let him know. I ended up down in the living room floor throwing up and in pain.

My mom came home from bathing the dog and we went to the ER. My dad met us there. Usually it is my mom and grandma, but my grandma was out of town. My mom had a lot of stuff she needed to get done from where we had been out of town all week so my dad stayed with me while they got my IV started and got me zofran and something for the pain. The nausea let up but not the pain.

A doctor came in an hour later and told us that my labwork looked normal minus a kidney infection/UTI and that it was probably just my Crohns and to follow up with my GI and he was going to send me home. I told him, “I think I have a kidney stone. I had one two weeks ago. Can you do a catscan just to make sure?” He told me he didn’t think it was my kidneys but that he would run the scan for me anyway. Only to come in an hour later and admit to me that I was right and I had a kidney stone. With nothing getting the pain and vomiting under control, they decided to admit me to the hospital.

The ER was not connected to the ER though so they put me on a gurney and used an ambulance to take me to the hospital, which was not very enjoyable due to my fear of being confined/trapped/held against my wishes.

They got me into the an observation room and by 1am I was in the local hospital for the first time since I was 9. It was small. The bed faced a window that had the shades drawn. There was a small recliner chair that my dad laid in all night. There was a mirror so that I could see who walked in and out of the door since the bed was faced looking away from the door. There was a sink and a small bathroom and a TV above the windows. It wasn’t a bad hospital room, it just felt isolated and lonely. Then again I think that is just how all hospitals feel when you are constantly in and out of them.

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They pushed Rocephin, fluids, and zofran over night and the next day as well. I saw the urologist Sunday who told me what I already knew, I had a kidney infection and kidney stone. I also had low potassium which they gave to me via the IV.

Sunday night was my first night alone in the hospital. My dad left late and my mom stopped in around midnight but she had to work the next day and despite not really wanting to be in the hospital by myself, my dad suggested I should convince her to go home and rest so she could get a good nights sleep.

I watched Lord of the Rings that night until almost 4am before I finally fell asleep. It wasn’t bad. It was just quiet. I know at 18 I should get better at voicing my concerns and advocating for myself in the hospital, but it is hard when all my life I have had my mother there to help with everything.

The next day they had the doctor come in and see me and decided that my potassium was good and my infection was under control and I could be sent home. The urologist didn’t want to see me for a month despite it all. I was to follow up with my GI in regards to my nutrition.

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My mom and I drove home in silence. She was upset with my health and the idea of having to travel to Cinci again. I was upset as well for mostly the same reasons.

I think one of the hard things about being a dependent 18 year old is that people push you to be independent when it comes to making your own decisions regarding your health and the next steps, but I’m also dependent on other people for transportation for treatment, medication, procedures, everything. So they push me to make decisions that I can’t fully make on my own because of my dependency on others. It had been the thing most upsetting to me over the last week.

I see how frustrated my mom and step dad get over transporting me and having to put up with staying places and taking off work and finding ways to pay for the time off work and the transport. I understand there is a lot of things that make it hard for them. It doesn’t make making decisions very easy. On one hand I should make the decisions best for my health, but it’s hard to make those decisions when I see how hard it is on the people I depend on for those things.

I wish I could drive and fend for myself and that way I could handle it all on my own and be the super woman that many people see me as, simply because they do not often see the vulnerable side of me through a blog page or facebook or in a text message. They don’t see the long nights of crying over decisions, over the opportunities I have lost and missed out on. My mom says she feels I was cheated of a childhood, to which I completely understand. Depending on the day, my story will change, some days I will not feel like I was cheated and I will be extremely grateful for all the small things, but there are some nights when no matter what depression hits me and I will see all the things that others have accomplished and done that I will not get to do, or have missed out on already.

It’s been one of those nights now for a few weeks, but I’m looking up for brighter days.




Back at Cincinnati ft NJ tube

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Andrew the Radiologist

Yesterday I came back to Cinci Children’s for a NJ placement. We arrived at 1pm and we’re informed they would have to do an upper GI test with barium. Since I can’t keep down barium, I agreed to put down an NG tube first so they could push the barium through that.

While they waiting for transport to take me for my test and NJ placement, they attempted two IVs with no luck. They told me they would bring in the VAT team after my test.

Around 2:30 or 3pm we headed down to radiology, they did the test and said everything looked good so they let me pull out the NG tube and got out the big NJ tube. Big mostly in the sense that is was a very long tube compared to my NG, but width was about the same.

I put down the NJ myself, only for them to tell me they would have to pull some of it back out since it was coiling in my stomach. They also put a wire down the tube (which felt awful due to the pressure on that side of my face created by the tube/wire combo), and then were able to get it into my duodenum but they still needed it to move into the jejunum so they messed around a bit more in hoping to get it in the right spot.

I started getting overwhelmed so I asked for a break, went to the bathroom and then decided to continue when I got back out. Luckily, with me standing and using the restroom, the tube made it into my jejunum.

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NJ Tube in my system

Finally we went back up to the room and let VAT try my IV for the 3rd time, which also had zero luck. They eventually brought up an ultrasound to find a vein, which worked very this time and they were able to get me started on fluids.

They told me I would only be here a couple days unless my electrolytes go haywire. So fingers crossed that I might be out of here by tomorrow!

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Cincinnati and Follow-Up

March 7th I had my follow up with my GI team and Surgeon. So naturally to avoid having to spend 8 hours in the car in one day, we drove up to Cinci on the 6th.

We met up with my friend Ashley and her mom and hung out before getting together with my other friend Jess and her significant other to go see “Zootopia”. Which if you haven’t seen it, I highly recommend it. It actually covers some very hearty topics in a casual way.

Basically it’s this perfect utopia where prey and predator get along just fine except that the prey are constantly discriminating against predators because they feel they are more aggressive due to DNA, there for they are often ostracized and kicked out of stores and places just for being a different race… sound familiar? Over all an extremely good movie with a great lesson for kids and even adults.

After the movie I went back to the hotel and to bed since I had an early start to the next day.

Upon arriving at the GI, he mentioned that I had lost more weight, and that inflammation was found in my stomach and esophagus and seeing as how I was still throwing up due to my gastroparesis, he recommended me do NJ tube feedings, to which I agreed and I go up tomorrow to have that placed.

He also said that he thinks that my primary care physician and I are right and that I most likely have some form of Ehlers Danlos Syndrome but he wants to find a geneticist or rheumatologist who specializes in EDS. Of course he also said that his main concern right now is the gastroparesis and Crohn’s seeing as how EDS cannot be treated but can cause other things. So he said that while he was working on finding someone to diagnose properly on that, he wanted to focus on getting my vitamins and nutrition back up and controlling the inflammation.

With that, he ordered labs and we headed home since we needed to pack and prepare for a 2-3 day stay for the NJ tube. Luckily, I was told I could drop my own tube and then they would have the radiologist guide it from there since I have never had anyone drop a tube on me except myself.

So I will update on that more after my procedure tomorrow if I have the time. I have a bit of school work I need to catch up on from being sick the last couple weeks with everything.