Day 1: Feeding Tube Awareness

Today marks the first day of Feeding Tube Awareness Week! I am LOVING looking at all the beautiful & handsome men who are not ashamed of their tube! Today in honor of the day I just want you to get up close and personal with my feeding tube! The more you see it the more "normal" it becomes to you. So, do share! I also want to answer frequently asked questions all about my tube.

1) "Does it hurt?"

•Nope! The granulation tissue, that inevitably will form at some point in a tubies life, does hurt though. If you want, you can look up what that is because I plan on addressing that later 😊

2) "Why do you have a tube?"

• I have never been in remission with my Crohn's Disease or any of the 4 other major diseases I've racked up so far. Including Gastroparesis. I have never met anyone in person with both Crohn's & Gastroparesis. And I can only think of 7 I've "met" via internet with both diseases. They are a oxy-moron as far as 2 diseases being present in the same patient. 

I hate to say it but like many others, I ran out of options. My stomach got to the point where it was almost 100% paralyzed due to Gastroparesis and combine that with a inflamed GI tract, I got my more permanent "tubing" in.

3) Will you have it forever?

• To quote my doctor on every new med/treatment I've had "Forever. If something actually works out for you, I want you on it forever or until it doesn't." 😅

4) What kind of tube do you have?

• I have a GJ tube. Meaning it's one tube but internally it's actually two "ports". One part is in my actual stomach so I can vent it & drain it. In other words, I burp and vomit through a tube so yeah I'm pretty talented. All the guys love it 😉 I also have a part in the intestines that I use 24/7 to put formula in. 

5) Have you had any other tubes before? 

• Yes. NG tube/G tube/GJ tube(& soon I might have to get both a G tube and J tube. Mainly because of my anatomy.

To be honest I was quite disgusted when I "graduated" from a G tube(only goes in your stomach) to a GJ tube. I knew it was going to have a part in my intestines but I did not expect it to get clogged with poop. 

I remember once I was skyping a friend(with a GJ tube) who lives across the country in hopes of her helping me & all of a sudden it unclogged and poop was all over myself, my bed & probably on her too technically. I was mortified but like she said, it's a part of me(pun intended). 

6) Do you miss food?

• Every day. I do cheat and eat and on those days I really hate myself because that involves constantly draining it out of my tube because if not, it will just be chillin in my stomach for a few years.

7) What do the words stand for on your tube?

• Gastric is the part that goes in the stomach, Jejunal is the part in my intestines & BAL stands for balloon. Yes. Balloon. I have a small balloon in my stomach that is used to hold it all together. Doctors/nurses/patients can insert a syringe and fill it up or deflate it however much it needs to be from time to time. You can feel the balloon(gently)easily even though it's in your actual stomach because it has to be close to the abdominal wall.

Farewell 2014

Today is New Years Eve and in less than four hours we will ring in the year of 2015. 2014 has not been kind to me. From the very start to the very end something is always going wrong.

The first half of 2014 I was in constant stress mode due to it being the last semester of my senior year. The stress put on me could both save come at a worse time because season changes always bring a flare up of a flare up(I say that because I have never been in remission). It was a perfect storm that ignited in my body. I also was undergoing family struggles at the time. With each day my symptoms grew as well as my school work. I finally reached my breaking point in February of 2014. My intellectual endurance was running on low fuel and my body? Well it burnt out years ago. I found myself in the hospital, at the doctor's office, and attempting to recharge my energy in bed, more than I was physically at school. Due to my many hospitalizations, I missed quite a few opportunities and wasn't able to participate in as many activities as I wanted. For example, I was in the hospital during the two weeks before prom all the way to the day before. My doctors discharged me the day before prom so I would have the opportunity to experience that mile stone. Although I was sick the entire time & only stayed for a few hours before having to go back to the hospital, I'm glad I took that opportunity to go. If I hadn't, I would still be questioning the "what ifs?"  A similar situation happened the night before graduation. I was in the ER for a horrible flare and I begged them to do as much as they could to discharge me late the night before graduation and I did. Of course I had to have special accommodations but man oh man it felt sweet to walk across that stage. I missed 72 days of school that year, maintained being in quite a few honors classes, graduated with a 3.5 GPA, had Endometriosis surgery in late 2013, I had countless hospital admissions during the beginning of 2014. I worked my tail off but I did what I was determined to do: graduate.

The health problems didn't end after high school. They only got worse. I was in the hospital that summer more than I was at home. I even missed college registration & my first year of classes. I was devastated but looking back, I know God had a plan for me. My Gastroparesis got to the point where I was forced to get a permanent feeding tube in my stomach. Between early October to the present I have had 4 surgeries because of complications of my feeding tube. For now, I am at a bearable point with tube feeds. Certainly FAR from perfect but it's livable. I have to hook up to my feeds for 24 hours a day, every day. We are now even discussing another surgery to place two tubes on my stomach: A G-tube & a J-tube.

As I type this I look at my poor hands. Yes, they are covered in inflammation from the Juvenile Rheumatoid Arthritis but they also have shingles outlining the curves of my knuckles as well as the surface of my hips treckling down to places covered by undergarments.

My last farewell to 2014 is this: You were crueler than the Grinch on Christmas. You left me with many presents I wish you would take back. But isn't the "new thing" now repurposing old, unuseful, rotten, tarnished things? In 2015 you will see these unwanted thing of mine become beautiful. How? Because I am beautiful. And any trial of mine always looks rotten but by the end I always come out refurbished.

Blessings

Last night(Christmas Eve)we celebrated Christmas early. Why? I have no idea! But I loved all the presents I got. I got two different hedgehog pandora charms, a lot of B&BW stuff, hedgehog stuffed animal, hedgehog ornament, tubie pads and more! 

After seeing everyone's posts and pictures on social media I had a feeling I rarely get: jealousy.

My night consists of coloring and listening to country music 📝🎼  While every one else is having fun with family and friends. I think a lot of my jealousy stems from that too. Since my family is broken all traditions have been thrown out the window. It just doesn't feel like Christmas.

Well I didn't get my Christmas wish for a cure for #Crohnsdisease #Gastroparesis #Endometriosis #JuvenileRheumatoidArthritis or any of my MANY diseases but at least Santa gave me tools to help pass time till the time comes for me to be cured(like coloring)!

Next week I seriously need to register for college this upcoming semester. Every time we try to go I'm ALWAYS sick in agony at home or in the hospital. Everyone keeps telling me it's okay if I just take this year off to focus on my health. I graduated high school in May and was all ready for college but of course I was in the hospital during registration AND the first two weeks of classes so I had no choice but to hold off. Which was actually a blessing in disguise because with all these surgeries and hospital admissions no way I could've kept up in college. I know a few spoonies who didn't go to college right after high school and had to take a year off for their health and now they're VERY successful in their careers after they finally graduated. I just don't want my diseases to hold me back. We're going to try to see if I can only take like 3/4 classes this upcoming semester and have them be at the Fairhope campus or preferably online. Fairhope is a hour drive so I'll have to drive a hour each way for classes so we're trying to make accommodations for me because of my being disabled. I'm trying not to freak out. Even if I only take 3 classes I just want to be able to go to college. I hate my illnesses for holding me back so much. Sorry I've been negative lately but I'm just going through this phase where I see all my friends and ppl my age partying, going to college and having fun and here I am. Laying in bed, pushing pain and nausea meds in my feeding tube, coloring and fighting for my life. I get this feeling every once in a while where I want to be like everyone else but I never will be. 

Those who have your health, you have no idea how blessed you are. I envy every one of you. I get jealous even because y'all are so blessed. I look at pictures of old friends from high school drinking(although I don't envy that), partying, EATING, being able to do whatever you want without excruciating pain. I'm blessed for the little health I have left. I just hope you know how blessed you are to not have to live your life everyday being miserable.

Tubes & Surgeries

These past few weeks have been hard. I have been so sick I haven't been able to update. Well, two weeks ago I was in the hospital at USA Children's & Women's because my tube was clogged. They used every wrong method in an attempt to unclog it and ended up flipping the J part of my NG tube into my stomach. So, I decided to go to Providence because at that time I wasn't sure if it was flipped or not but I was right, it was flipped. The GI at Providence admitted me in a attempt to do the surgery and he COMPLETELY botched it. We had trouble from anesthesia(I was awake the whole time)to not getting the scope in due to scar tissue from Crohn's. After surgery he basically admitted to malpractice. He had never done the surgery before. He hasn't even had a patient with a permanent feeding tube! So after major finger shaking and a screaming match I asked to be discharged so I could see MY Surgeon & GI in Birmingham. Behold! They did the surgery with no issues whatsoever. We came home last Thursday.

On Friday I had a doctor appointment with my PCP & was DX with multiple infections from my ears to my throat to my sinsus's. It was kind of a shock to me. I guess I'm just so used to being sick I don't realize when I'm "normal" sick. But, still, I'm recovering. Step by step. Other than being DX with all kinds of yucky stuff and being DX as vitamin deficient, I had a great appointment. He RX me all kind of meds for my infection and sleep and pain meds. I am very blessed to have Dr. Rawlings. For now, I shall recover. I will try to update later.

ER adventures

Tuesday night I landed myself in the ER. My Gastroparesis & Crohn's were so out of control & my mom was picking up Blake from school so I had no choice but to call 911 which I've NEVER done before! My mom has called 911 maybe three times in the whole 5 years of me being sick with Crohn's, Gastroparesis, Juvenile Rheumatoid Arthritis and Endometriosis. She got to the house at the same time the ambulance did & by that time, I was miserable from throwing up blood and pooping blood constantly.

The ambulance brought me to the ER & my mom followed behind. I got my least favorite ER doctor but I think he could tell I was not in the mood for his BS. I was given Dilaudid, Zofran, antibiotics and fluids. I put contrast through my feeding tube for the CT. The CT scan showed my Crohn's was very severe and because my stomach was so paralyzed, that's why I kept throwing up. They wanted to admit me but I refused because next week u get my G tube changed to a GJ tube so they RX me meds in suppository form so I didn't have to take anything by mouth. I was given another dose of Zofran & Dilaudid before I left.

Having two out of four diseases(Crohn's & Gastroparesis)that you have ran out of medical options for is scary. Waiting for a cure is scary. I have taken every Crohn's medication available except Entyvio because it is not approved for the treatment of Juvenile Arthritis also. I have tried very med for Gastroparesis also and it either didn't work or it would make my Crohn's worse. So here I am, eighteen, feeding tube dependent because of a never ending flare & paralyzed stomach. Yet, most days, I'm okay with that. My hope is in Him. Not this Earth. The only thing I can do is pray for peace and my doctors to have compassion and wisdom. I am very blessed to have amazing support from family and loved ones and that in its self is half the battle.

Brain Fog

Today I feel....miserable. I haven't felt this weak in forever. I woke up at 1:30 this afternoon after sleeping for 13 hours straight. I tried taking morning as well as afternoon medications but I just don't even want to think about that right now. My head is pounding. I have blackout curtains in my room & only a slither of light can shine through from the top of the curtain; even that slither, is too much light combined with my iPhone screen on the lowest setting for brightness. Everything is ganging up on me at once. Endometriosis, Crohn's Disease, Junior Rheumatoid Arthritis, Gastroparesis and let us not forget the dreaded "normal sick" that has been plaguing the house.

Last night I started spotting way too early than I should have. Since being put on birth control for my Endometriosis, everything has been smooth sailing. I enjoy only having four periods a month. This month my cycle has been out of whack. I can't help but thing it's because my Endometriosis is back, I'm not digesting my birth control, I'm too sick to have a normal period, or it's a combination of all three. When it comes time for me to have my period, I'm usually pale(r) and weak(er) from the increased anemia. Today, isn't any different. 

I plan to pick up my little brother in a hour and when I return home, I shall start my feeds and...sleep yet again.

Brittany Maynard

Brittany Maynard's recent assisted suicide or if you like the term "death with dignity" better, has been a hot topic. A topic that puts Christians on edge. For good reason.

Not many are educated about chronic, incurable illnesses. I am. Therefore I know where I stood long before this happened. You do not, I stress, do not, have to have a chronic incurable illness or be terminal to have an opinion about this topic. Although it helps. I've heard many arguments that just fall flat as to why they support it but I am not here to attack or argue. Everyone has an opinion.

 Being a Christian is hard. There is a thin line between judging & holding people accountable. The truth hurts. If you aren't getting criticism then you aren't preaching the gospel.

Here is why I believe Brittany Maynard is not brave & why I do not agree with her choice. I have nothing against her. I don't even know her. And chances are most reading this don't either. Remember, I'm saying why she's not brave. I am not comparing illness severity although people in the chronic illness LOVE to throw out that card during a hot topic such as this.

Lamentations 31:33

"For The Lord will not cast off forever. Though He causes grief, yet He will show compassion according to His mercies."

Translation from another bible:

God puts limitations on your trials, dark moments and temptations. Whatever you're facing-whether it involves your HEALTH, relationships, finances, or whatever it might be-it will not go on forever. The Father is teaching you to TRUST Him and PERSEVERE. He seeks to make you COURAGEous, bold, trustworthy, faithful, diligent, and disciplined. These are God's purposes....but you must yield to him.