The Bagel Breakdown and How the Bible Saved Me

So this feeding tube thing. It's not going so well. Ya might have picked up on that from my Facebook posts. Well, I haven't even posted the half of it. Sure I've posted the physical half of it, most of it, I probably haven't even posted the half of that actually...but I sure haven't posted the mental half of it.

I know my last post talked about how I "live my life transparently" for chronic illness vengeance and advocacy or something like that, but until Sunday at the grocery customer service desk I didn't even realize I wasn't even being transparent with myself so I definitely wasn't being transparent with you, my esteemed readers. So this, this blog will be transparent. And I'm already bawling in my bedroom writing it and have been every time I think about writing it for the past 1.5 days.

Because it hurts. I hurt. I'm broken beyond repair right now. I know everybody has pain. I know everybody's broken, I've written about that before. But taking away food from a foodie? That was the straw that broke the camels back. I've been dealing with this for 12 years. I've been doing it with God and humor on my side with a few faithful friends along the way. And I still have all 3 of those. They're just harder to feel right now because before I also had food. Comfort food. And lots of it.

Before I was sick and I would get stressed out I would run and run and run until I couldn't run anymore. After I got sick I would eat and eat and eat until I couldn't eat anymore and cook and cook and cook. Now I can still cook. But I can't eat what I cook. Then I have doctors telling me they want me to eat. So I get all excited and I do eat and it just puts me in a lot of pain and I throw it up or have to go to the bathroom immediately, or can't go to the bathroom at all. It's painful, causes bloating and distension. It causes my autonomic nervous system to go off kilter so my heart rate and blood pressure go crazy, I've had super bad headaches too. So even though I'm encouraged to eat it really doesn't go that well. Except for one thing I figured out, bagels. For some reason I can tolerate a bagel (or most other bread items--gluten free of course) without any side effects at all.

So off to the grocery store I went where I knew they carried my favorite brand of gluten free bagel and got some other items that I wanted to try and some things for my mom and got to the bagel aisle and there were no bagels in stock, so I start reading the tags. There are tags for 2 gluten free bagels, neither of which is the brand I want to buy. Both brands that have tags are brands I know that I do not care for, and if you've tried gluten free you know "do not care for" is code for "tastes like cardboard". I ask the stoker there and he tells me to go to customer service at which point I am told that the brand I would like is not carried there at all anymore even though they have other items there from the same brand. More words are exchanged and a promise to call the next day (which still hasn't come by the way). And then it happened. In the middle of the grocery store, because I can't have a bagel, the only food I know I won't react to, I start bawling all over the place. I can't stop. All I wanted was a bagel...with blueberry cream cheese to be exact...and now I could never have it again?!

The poor guy at customer service couldn't figure out why I was so upset, I'm sure customers had no idea what was going on, heck I didn't even know what was going on. Why was this bagel so darn important to me? Looking back with a more clear vision 2 days later I think in my head that bagel represented all the food I can never eat again. I mean you're talking to someone studying dietetics in school who watches Food Network 10 hours a day usually, loves to cook, and loves to eat and try all kinds of new and exotic foods...who now eats through a tube and can't even chew or taste things anymore. It's a big loss. I've been under a lot of stress with some doctor stuff and some other things too and it all just came to a head, but man was I a mess.

Then yesterday I decide I'm going to buy James MacDonald's book called "When Life is Hard." and re-read it because I've already read it once. I was reading the foreward and in it there was reference to Psalm 42:3 and it says in big bold letters "My tears have been my food day and night, while they say to me all the day long. 'Where is your God?'" Now this person was coming from a very different context. But to someone who literally broke down crying in the grocery store the day before (and had broken down previous and subsequent times for other foods and cravings) because she can't tolerate anything but her tube feed the words "my tears have been my food day and night" stopped her in her tracks. I almost couldn't breathe. I immediately got my Bible out and started figuring out the context and found out that it was from the famous verses "As the deer pants..." verses Psalm 42 which I should have known off the top of my head, but anyway...then if it couldn't get any more solidifying for me, vs. 5 comes along and it says: "Why, my soul, are you downcast? Why so disturbed within me? Put your hope in God, for I will yet praise him, my savior and my God." and I'm stopped dead in my tracks again, because it has my keyword HOPE in it.

I'm telling y'all with everything I've got going on in my life right now there was no better comfort than knowing two verses away from each other was my BIGGEST problem and God's BIGGEST promise all wrapped up in one tiny package tied up with string! He even places the question of "Where is your God?" right there in the middle, it's almost like he's mocking us saying why are you even asking where am I? I'm getting ready to tell you. I'm right here. Keeping your problems close. Giving you hope. Just like always. Wrapping you up tight. Holding you in the palm of my hand.

Living My Life Transparently

I've been struggling a lot the past month. More than most, but not the most. I haven't been blogging because I've been in and out of the hospital and it really takes a lot of energy to blog. But I have been posting on Facebook to keep my friends and family updated because it's a whole heck of a lot easier to do that than to call 327 people (or however many it is on any given day) to update them of what each stupid doctor said that day, especially when I'm on so many pain meds and feeling so lousy and can barely lift my phone. So I post a quick Facebook update or picture of my tube falling out or something to that affect. 

However, there is always a RISK in this. Because not everyone wants to see all the medical drama all the time. In fact, most people don't want to see it at all. So my posts get hid from their timeline and I am erased from their life. Or I get repeated messages in my inbox either telling me that I post way too much about my medical life or giving me suggestions for a miracle cure. Both of which are mega annoying. But I need to update people and that is an easy way to do it. So get over it. Really. It's my Facebook. You knew I was sick when you became my friend because I am only friends with people who I actually have relationships with. So I'm sorry. This is my life. I am sick. Very sick. Sometimes more sick than others. It is a BIG part of my life. I will not apologize for it. And I should not have to.

I am also a Christian. I also love music. I also love my friends. I also hate hospitals. And hospitalists. And pharmacies. And ignorant doctors. And ER's. And people who do not understand me. And I do not understand my friends that say that they want to be my friend and understand me and are so supportive to my face but then I hear that they said x, y, z behind my back because they really don't understand me. Please ask me questions to my face. Please let me be my own advocate. Please try me. I have all the answers and they do not contradict themselves. I promise. Please do not call me a hypochondriac. Or tell me what I'm telling you is impossible. I will tell you why it is. I know the science of why it is even. This is why I live my life transparently. Because I want to be understood so that I do not get hurt as often.

But sometimes I feel like living my life so transparently is what ends up getting me hurt in the first place. Like if I didn't offer up so much information then nobody would have anything to hurt me with. Recently I spent time with a really, really good friend who lives her very sick life more like this...all closed off and hidden like...and ya know what's interesting??? We were talking...and she gets hurt by her friends for the same things that I do too even though she shares very little if any information. So how do we both live our lives very differently and share very different amounts of information and both get the "same shit on different days" from different friends about our chronic illnesses (which is the same by the way)?

I was driving home from visiting this friend and another friend with the same illness and a doctors visit in Indianapolis this week and the song "Iris" came on my I phone and the chorus just cut through me like a knife and I realized part of it spoke to my friend and part of it spoke to me in how we live our lives and why we do what we do and why it hurts so much. The lyrics are:

"And I don't want the world to see me
'Cause I don't think that they'd understand
When everything's made to be broken
I just want you to know who I am"

 And all in one chorus (because music speaks to me so clearly), in a song I've heard at least a million and a half times, it's like the skies opened up and it was clear to me why my friend stays so quiet about her health conditions and why I'm so vocal about mine.

She doesn't want to say anything because she doesn't think anyone will truly understand what she is going through and know who she is. Me on the other hand. I'm so vocal because I want people to know who I am and I don't want there to be questions and I want people to understand me. I don't want the world to see me as a stigma or this weird thing in the corner that has to be handled with care or treated differently. I also want people to realize that I know my limitations and that I should be invited to everything or treated the same and if I can't do it I will say no, but please don't assume I can't do it unless I tell you I can't.

If you are a doctor and I come to you telling you a list of symptoms please don't tell me it's impossible. If you are a pharmacist and you are out of my medicine and tell me you are going to order it and have it the next day please do so and don't forget and not have it for a week later and then it's out of stock nationwide and it's so hard to get it's not even funny. If you are a doctor and get a note from another doctor that doesn't particularly like me that says I'm not well adjusted and have anxiety and on and on and have issues with having so many chronic illnesses and walk into the room and tell me I haven't done ANYTHING since being a teacher 3 years ago please do not tell me that I have a mental health disorder and need to learn that just because I have several diseases that the diseases do not have me.

You do not even know me. None of you do. None of you know what it's really like to live like this. Nobody knows what it's like to get tired from walking to the bathroom. Or to have to carry 15 pounds on your back all the time for your food. Or to get stares from people because of your food. Or to have to carve out around 10-20+ hours a week for doctor/nurse/treatment time. To take 19 pills plus 17 syringes full of meds every day. To not be able to eat without throwing up and to get most of your calories through a tube in your small intestine. Eating really is something that is missed so much. Especially with Thanksgiving coming up.

But I am still happy. I am still me. I still am pursuing a master's degree with a thesis option, slowly but surely. I will finish one day. I still run a support group on Facebook. I am an active member in several other support groups. I am in a wonderful C-group through my church. I "attend" church weekly online. I have friends I meet with regularly for community encouragement and support. I try to find volunteer opportunities and do good deeds when they are available. I wake up every day and get out of bed, which many people with my amount of conditions can't say they do.

And this is why I live my life transparently. This is why I post medical stuff on my Facebook page. Because I want people to know no matter how much crap I go through (and my friends are consequently going through because we have the same issues and there is no mass awareness yet of our conditions). I want people to understand me. I want people to stay up to date with what is going on. Most of my Facebook friends are chronically ill as well so it isn't a big deal to them. And the rest of them are supposedly my friends so I would assume you would want to know what is going on as well. I know it gets overwhelming to read about. But imagine what it's like actually living it. Just sayin'.

I don't know why I felt so compelled to write all this out. And it doesn't really feel tied together to me. But it just seemed like I had to get it out there. That I will say what I want to say when I want to say it because I want to live my life transparently. I don't care what people think of me. I want to bring awareness to these stupid conditions. I want people to understand what living with chronic illnesses is like. I want people to understand that we don't just lay in bed all day. That it's not all fun and collecting money from the government. I don't think that anyone will ever understand me completely (or anyone with a chronic illness for that matter). But we are all broken. And I just want you to know who I am. So I'm going to continue living my life transparently. For me. And for my friends who don't feel so comfortable doing so. So we can all be understood a little more. Hopefully.

Confessions of a New Tubie

I'd just like to make some confessions real quick, that I'd really like to not have anyone know I said them, so I'm gonna hide behind my blog and say them anyway because no one knows who writes this, right?

1) When I was in college, and I was doing observations for classes in a severe and profound classroom I witnessed my first bolus tube feeding. This almost made me want to not be a special ed teacher or deal with special needs kids ever again because it seemed so disgusting to me. I was literally gagging. I don't know why. I had to leave the room because I loved the kid, he was one of my favorites. And I didn't want him to see me upset. This student was also my first student that passed away. I also associate that with tube feedings. I've been forever grateful I never had a student that had a tube feeding, I didn't think I could handle it. Now I have one. Joy.

2) It's almost a Shakespearean irony that we did this whole hey we're gonna give you a feeding tube so that you don't fall asleep when you eat so you can function better at school and in the process it forced me to go on leave from school because I missed too many days from the hospitalization and complications and recovery.

3) I'm really, really mad at my surgeon and my GI doctor for not helping me out in resolving my issues. Right now I can only get a maximum of 400 calories a day through my tube, and I can't eat by mouth much. That's not livable docs. Duh. And I really, really miss being able to eat whatever I want whenever I want (minus the stupid like issues I have while eating of course, but some food is better than no food).

4) Sitting around your room and watching TV all day sounds like living the dream, it's not. Trust me. I'm really bored, but then I get up and try to do things and it wears me out. So then I go back to doing it.

5) Bile is really, really disgusting. Especially when it is coming out of your tube. Onto your clothes. And it smells. And it's warm. And it makes me almost throw up. And this happens every time I have to access my tube for meds (at least 3 times a day) or to change the bag (1 time a day) or take a break for any other reason (5-6 times a day). And it's not normal. I also for the life of me cannot understand why no one is concerned about the fact that this is happening except me, my mom, and my support groups online.

6) I have had 3 separate nurses, un-prompted, tell me my "feeding tube" is actually a central line. I cannot wait until it gets changed to whatever the crap it's supposed to be so hopefully some of my complications can go away.

7) After having colitis for so many years and having to deal with the constant always having to rush to the bathroom all the time, words cannot express how many times in the past 3 weeks I have wanted to be able to go so bad. Because hey, when your intestines are paralyzed you can't do that and it really, really sucks.

8) I firmly believe that all dietitians should have a NJ tube at one point in their schooling so that when they are telling their patients that it isn't a big deal to have to go get it re-placed and to go out in society with it and deal with the constant annoyance of having it in your face for 24/7 they know they are lying.

9) I really do like that I can do some meds through my tube now. Especially the pain ones. They hit much faster that way. As long as they get absorbed and not spit out by the evil stupid backflowing tube.

10) No one really asked me or has asked me how this makes me feel emotionally minus like 3 people. Guys, this is life altering stuff. Food is so emotional. Especially for someone who spends most of her TV viewing on Food Network, is a dietetics student, loves to cook. This is hard. And it sucks. But no one asks you. They all just tell you you are being anxious and over reacting and it's no big deal and just wait 6 more days to see the doctor. That's just not acceptable to me. Why should it be? I don't understand. But I guess it's not up to me to understand right now.

11) That's an odd number to end on, right? I really hope my list of confessions of a tubie can begin to be more positive after my doctors appointment with my GI doc tomorrow. Hopefully when he sees it for himself he will come to his senses and do something about it and get it changed out sooner rather than later. Hopefully he will listen to me, he hasn't yet.

And if not He is still good...

I have been on a MAJOR blog hiatus and I apologize. Seriously. I do. I know I have loyal readers and I know I have readers that aren't so loyal, but I like to think they are. Anyway. Sorry about the break.

I had my J tube surgery on October 2nd and let's just say the outcome was less than desirable. For multiple reasons. And honestly as I was telling one of my friends the other night, the number one reason that I haven't been writing is because even though life with a chronic illness sucks and is down right terrible and I tell the 100% truth in my blog and I don't sugar coat it, I at least try to most of the time put a positive non cuss word spin on it...and honestly for the past 3 weeks I didn't have me in it to do it. I couldn't find anything positive. I couldn't see past the pain, past the destruction of my body or my life, I couldn't see Him still being good. Because I'm an idiot. But I couldn't.

Until things started turning around about 5 pm Thursday night and have kept getting better and better. And trust me, they're still really painful, but no where near where they were even Thursday morning. so we'll take it!!!

So here's the hopefully quick and dirty summary of what did happen to make it so rough to begin with and why now all the sudden I can see that He really is still good. And if you haven't figured it out the He is referring to is God. And if you would like a reference to the title it would be Daniel 3:17-18 where Shadrach, Meshach, and Abednago are getting thrown into the furnace and are telling the people doing so that God will deliver them and even if He doesn't they still won't serve their gods and idols because our (my) God is still good and deserves to be the only one served. So now back to my firey furnace of a couple of weeks.

So before the surgery even started the surgeon and I got into it because I just so happened to have a friend that had a J tube put in by the same surgeon 6 weeks prior and hers fell out 6 days later because he forgot to inflate the balloon so needless to say I was a little nervous because on top of having the tube put in I was also having 3 biopsies done. 2 of those biopsies were being done on my stomach and small intestine and because I have Ehlers-Danlos syndrome (a connective tissue and muscle disorder) it was known that taking the biopsy from those locations could paralyze my GI tract if he wasn't careful enough and I already knew he was a careless surgeon so I was paranoid. But he wouldn't do the surgery until we hugged and made up so I did and went in and was ok.

I came out of the surgery and didn't wake up til almost 8 hours later and found out (on Facebook) that I had to get a different device and would likely need it replaced soon because it was not a normal J-tube. The surgeon came in soon after that and confirmed that I would have to have it replaced in about a month. This would mean that I would need to miss even more school and I was already on my second week and I was only supposed to miss 2 days if you remember right from a previous blog post. And my tummy and leg I'm pretty sure are scarred for life.

Anyway, I stayed in the hospital for 3 whole days from the surgery when I was just supposed to stay overnight and they wanted to keep me longer, but I was ready to go home. But we couldn't get control of my pain or get me to go to the bathroom (TMI I know), or get me to walk around much because of the thigh muscle biopsy, or anything else. But I went home. As soon as I got home it all went down hill from there. Who would've guessed having a pain pump with my own button to push whenever I desired and IV nausea meds made things so much more tolerable. It became very apparent, very fast that I wasn't going back to school anytime soon (at least 2 more weeks) which would put me on 4 weeks being out of classes when I'm supposed to be out of class only 2 days. So on Sunday, October 6th I made the decision that something had to be done about school.

But I kept it a secret until Tuesday in case a miracle happened. Which it didn't so I emailed the profs and we started figuring out the best options. And it took all week of me waiting and not knowing, but this ended up being one of the best ways of God showing how He is still good. He was telling me no because He was telling me I couldn't finish school right now, but He made it ok. He might of made it better. But don't tell. Technically, if we have to leave the program for any reason we have to reapply and all that jazz. Well, we are working it for me a special way. Right now I'm in 3 classes (2 program and one online that I need to graduate but isn't a program class and working on my thesis). Next semester I was going to have to do my Internship and had to sign up for an in town internship (since it's hard to travel because of my health) basically as soon as I got in the program because they are hard to come by and another online class. So in order to avoid me having to pay for as many credits over again, allow me to not be as bored when I start feeling a bit better and cut down on as much as I'll have to do next year this is what they came up with.

This semester instead of completely withdrawing from all my classes (medical withdraw), I'm staying in my online epidemiology class since I don't actually have to go to school for that and in my thesis credits. Next semester I'm still going to take the online class that would go with my Internship even though I'm not doing the internship and another online class so I have enough credits for financial aid. Then the next fall I will just have to retake the 2 classes for the program that I'm having to drop now. Then the next spring I'll do my internship, then I'll be done, hopefully. See He's still good. Great even.

Now the tube has been a different story. It's small. It clogs. My intestines are paralyzed for most of the time. So they don't work. Which means I either go to the bathroom too much or not enough (again TMI sorry). Either way they're is excruciating pain in my abdomen at all times. Even still after this amazing turn around since Thursday afternoon there is pretty much always pain there at about a level 7 and it shoots randomly to a 10, pretty frequently. But prior to Thursday I was living at a level 10+ pain in that general area 24/7 all the time. I am thankful for the relief. But I'm sad it's still there pretty frequently.

The GI doc has been worthless, the surgeon has been worthless. The geneticist is awesome but can't do anything because it's not his area. I call the GI and he says it's the surgeons fault, I call the surgeon and he says it's the GI's fault. I, personally, don't care who's blasted fault it is, I just want someone to fix it quite frankly. I am going to the GI doctor on Tuesday. But I'm pretty sure the appointment will be worthless. Just to be sure we get somewhere I'm bringing my mom with me. I NEVER let my mom in a doctor's appointment with me. But I am SO fed up with this particular doctor she is coming in because she's the one having to take off work all these days and drive me back and forth to all these worthless doctors appointments, and walk back and forth to my room to help me sit up because I can't do that without being in writhing pain, or trying not to puke while she's holding the bucket and flushing my puke down the toilet because I tried to eat food again (silly me), etc, etc. So she's going with me and we are hopefully going to get some answers and take him down.

The tube had been clogged for several days and I went to small group on Wednesday night and we prayed over it. Then Thursday, with it visibly clogged, I plugged it up and turned on my pump and lo and behold and worked. And my stomach hurt less. And everything just felt better. And Friday it did too. And I even got up early to go out to eat with my extended family. And wore real clothes. And did some stuff around my room. And today was even better. Like way better.

Today I got my entire bathroom re-organized and cleaned top to bottom. Re-organized my closet. Re-organized and cleaned most of my bedroom (just my desk left to do). Took an epidemiology quiz. Washed my sheets, my comforter, and all my clothes. Moved around some furniture in my bedroom (with mom's help). Took a shower. Ate some dinner (yay for real food!!!). And wrote this blog. And that's more in one day than I've done in 3 weeks. I'd say that's an accomplishment. Oh and I got an email that my thesis is approved by the IRB so I can finally start working on that!!!!

So now that everything is working out and starting to look a little bit more on the upside. I can see that the whole time He was still being good the whole time. He was giving me time to have surgery and heal by not approving my thesis til now. He was giving me time to work on it without the extra added stress of a whole bunch of classes by making me have surgery so I had to take a step back. He was making me rely on group prayer by making my tube clog and not having anything work and yet when I hooked it up in the same condition without unclogging it the next day it worked.

God is good, all the time. It's just that sometimes, it's just a little harder to see it. And it's in those times that we have to take a step back and lean on others to help us see the good. I'm glad I took these couple of weeks off from my blog. I needed to process and get right with myself and not be mad at God because I know that no matter what He is still good.

A summary of my week of HOPE

So for those of you that don't know/didn't know, I was admitted to IU Med Center last week for 4 days for some pretty extensive testing.

I've been having issues since last November of every time I eat, I will either pass out or HAVE to fall asleep. Like it's not a choice. You can't keep me awake for anything. Every single time I eat. Or should I say ate.

After a lot of complaining and protesting and telling people that seriously, this is not ok, and it's really affecting my quality of life and my ability to succeed in school I fired my GI doc because he just wasn't doing anything. So approximately 5 days after I fired my GI doc I get a phone call from his nurse basically saying you wanted us to do something, we're doing it. We've suspected my eating is not related to GI at all, but a potential mitochondrial disorder, but the earliest I could get in with the geneticist was December 30th. We also have suspected that if we feed me through a feeding tube and by pass food going past my vagus nerve then I won't have to sleep after I eat because it won't be stimulating my autonomic nervous system, or that I am just plain out using too much energy digesting my food from the probable mitochondrial disorder I have so if I'm not digesting food because the tube feed is already digested for me I won't have to sleep either.

So my GI doc got me admitted for 5-7 days, which ended up being 4, which will really end up being 7 in the long run days in the middle of the semester and nearly got me kicked out of my program at school.

Our plan? Feed me through an NJ tube to see if that alleviates my symptoms while I'm hooked up to a telemetry pack and get my blood pressure taken every 15 minutes. And have that geneticist that I wasn't supposed to see until December come and run 5,000,000 tests on me and ask me 10,000,000 questions. The only reason I agreed to do it in the middle of the semester was because of the geneticist. Honestly. Oh, and because it was like God told me I couldn't not go.

I've been waiting for this extent of testing for at least the past 5 months and it never came together. And now it did. Randomly and suddenly. And I got the phone call the day we were talking about listening to the Holy Spirit telling you what to do and to do what He is telling you to do and right before the sermon on Hope. Which is kind of my thing.

So I went to the hospital. After some scheduling snafoos, some room snafoos, and some more scheduling snafoos. I went down to get my NJ tube and I came back like this.

Then they started feeding me through the tube. Then they decided to have a speech therapist come see me to talk about my swallowing. Then she decided to try to feed me, but my throat hurt really bad from just getting a tube shoved up my nose, down my throat, into my jejunum. So my swallowing was even worse, so I got to do another barium swallow study, when I just had one 2 weeks ago. And again it was normal, of course.

Somewhere in here I also got a picc line since I have no veins (which they didn't let me keep and I'm super bummed about), got some saline started, got about 30 tubes of blood drawn.

We had to not let me eat so we could see if the tube feed was making me better or not and if you've never been tube fed before you wouldn't know this, but you have to work up to your goal rate, so I was basically only getting 240 calories a day for 2 of the days, and still only made it up to about 880, maybe 1100 calories a day the whole time I was in the hospital.

Tuesday I started saying that the tube feed was giving me lots of energy and I felt like I was more awake than normal. So then a neurologist shows up and thinks this (along with some other issues I have) are weird of course so he wants to do a 24 hour EEG and telemetry. So then I got hooked up to this contraption

 And ended up looking like this:

Then I got really bored because I couldn't get out of bed at all and they didn't want me to move much so it didn't interfere with the results of my test, but ironically the tube feed formula was really kicking in so I had tons of energy and spunk so I took pictures of my Saline and my "Food" and did a whole bunch of homework while I tried to drown out my really, really annoying roommate.

Then they made me eat to see what would happen if I ate "real food" since I was doing so well on the tube feedings so I ordered some food, ate it, and immediately fell asleep. So then the decision was made that I would become a tubie. But I will also be able to eat and drink normally too, when I want to as long as I'm in a safe place so I can sleep. So then I waited around to get my J-tube surgery and while they were doing that they were also going to do a small intestine biopsy, stomach biopsy, and thigh muscle biopsy to get more tests for the mitochondrial disorders.

I ended up not getting any of my tests back for the mitochondrial disorders yet (they take weeks to get back). My EEG and my telemetry stuff both show I'm not having seizures or that it's not my dysautonomia that is making me sleep when I eat.

My surgery ended up not being able to be done last week because of the surgeons schedule. So I will be having the surgery done on Wednesday of this week.

I'm a little nervous, and it's a big life adjustment. But I've just spent 2 full days awake which is the first time in almost a year and today I even felt like crap, but I didn't need to take a nap. So I will take it. I think. Though I'm really not excited about it. At all. But no one asked me. Well 3 people did, but none of them were my doctors or nurses or dietitians. So I'm a tubie now, I've got my NJ tube until my surgery Wednesday, then I'll have my J tube, and I'm hoping it's a lot better then the NJ tube. Now I'm gonna go to bed and try to sleep while I "eat" attached to my IV pole so I can have some energy tomorrow. Now there's some HOPE for you. Energy. Life. Despite the illness.

2 years ago today.

2 years ago today, I had lost my job 18 days ago. I had flown to Indiana to talk to my mom about it. I had already been offered an interview at a different school system. 2 years ago today, 14 days ago I flew back down to North Carolina and went to church like always and asked for direction and prayer and that God would do His will, but that His will would be that I would get to stay in Salisbury for the rest of my life. Because that was my "home". 2 years ago today, 13 days ago I had a horribly high fever (102.5), couldn't stand up, my colitis was flaring something horrible, but I got in my car and drove the 40 minutes to my interview in the next county over, because I just knew God would never ever tell me that He was going to make me leave Salisbury, ever. It was His Will that I was to live in Salisbury for the rest of my life. I just knew it. It was so perfect. I loved it. I loved my church. I loved my friends. I just knew I was going to love my new job, it was at an elementary school (which is what I really wanted originally anyway). I was working with the youth group. Disciple Now was this weekend. Young Life was gearing up. Upward was awesome. I was volunteering at the farm again. How could God say no? 2 years ago today I could not stay awake, when I was awake I was running to the bathroom getting sicker and sicker out whichever end was pleasing at that time. My fever was now up to 104. Then my phone dinged. I was a well-qualified candidate, but they decided to go with someone else. Seriously God? I'm dying and you are telling me you aren't going to let me stay in Salisbury right now? What else? At this point, I really think I can't take anymore and I call my friend Misty and say I think I need to go to the ER. I really think I need to go to the ER more over heartache than what is coming out of my bum and my mouth, but I would soon learn I am very wrong.

When I go to the ER and run to the bathroom to puke my brains out one of the many times, just as the doc is getting ready to send me home because he thinks my colitis is just a little flared up and I keep telling him I'm fine I've got life to live, my friend secretly tells him I'm a lot sicker than I let on and I need to be admitted. I come out of the bathroom and fall to the ground. The doc asks me if I just threw up and I say yes, he said what color is it, I say yellow, he says "that's bile, that's a direct admit, that's really bad kid", and it begins the longest, hardest 13 days of my life.

I only spent about 3 days at Rowan, I was too complex for them. I was pretty much comatose at this point. I was so malnourished it's not even funny. I was transferred to Concord and put in CCU because my potassium was so low my heart could have stopped at any second. I was also on TPN for nutrition because I couldn't eat anything by mouth. They weren't sure I was going to make it for part of the time I was in the hospital. My mom was in Indiana. It was really scary. Luckily my church family was awesome and there every day. I weighed 99 pounds. I'm 5'9".  That means my BMI was 14.6. For all you non-dietetics students, a normal BMI is 18.5-24.9 and almost no one can fit in those parameters and I was 4 whole points underweight.

I eventually, obviously, got better, and got to go home. And food, TPN, lots of milkshakes and ice cream, and Klor-Con, and some pretty smart dietitians saved my life. 2 years ago, during this hospital stay, is when I decided I was going to be a dietitian.

2 years ago is also when God said no. The doctor walked in my room around September 28th/29th/30th, when I started getting a little better and said, "You're going to be getting to go home soon, but you can't live by yourself, you are too sick. You're mom lives in Indiana. You have to move there. You can't take care of yourself." And my world ended. Or so I thought.

Since I've been here we've found out I have several more really severe chronic illnesses that would be very difficult to live on my own with. It would have also been very difficult to move with them in full force, so it is like God was moving me ahead of time so that I was settled when it happened and could just be taken care of. I have found a church and a C-group that I love. My mom just so happens to live in a town that has a competitive dietetics program that I just so happen to have been accepted into on my first try. And I just may have found some of the most awesome doctors that are willing to try and find some pretty rare things and try different treatments to help me have as good of a quality of life as I can for as long as I can. And that is pretty cool.

While I'm on that note, I found out today, on my 2 year anniversary of being so close to death, that those pretty cool doctors I spoke of, have decided due to my quick deterioration of health lately that it will be best to admit me to the hospital for at least 5-7 days next week beginning Monday. I will be under the care of 2 GI doctors, a dietitian, 2 different neurologists, a cardiologist, and a geneticist. We will be exploring all kinds of options and things including doing my "mito" testing (which wasn't supposed to be until the end of December), an NJ tube, and whatever else they decide they want to do. I'm not really looking forward to it, especially the missing school part. But whatever. It's all part of God's plan. And I'm much more hopeful for spending a week in the hospital during the anniversary of 2 years ago as finding a path to more quality of life than making sure that I'm even going to survive. It's the circle of life. And I'm hopeful we find good treatment plans and solutions and answers.

"Now faith is confidence in what we hope for and assurance in what we do not see." Hebrews 11:1

Four Hours A Week

The debate of the semester (between my counselor, my friends who have the same illness I have, and myself) has been a heated one. It has been this, which should be a simple question, why is it that I can be little miss advocate all over Facebook, to my doctors, in the classroom, and more but not stand up for myself at clinicals?

Why do I insist on going every week and refusing to advocate for my needs fully in demanding to use my wheelchair? Asking to sit down while looking at charts? Taking my water bottle with me? Having my salty snacks with me? Why every where else but here? Why can't I advocate for myself at clinicals? This should be a simple answer, no? So why can I not tell anyone why I can't advocate for myself here, at the hospital? Why do I have to be super human here? Then I have to deal with the week long crash afterwards because I don't advocate for myself to get my accommodations that I deserve at my clinical sites. Why have I not been able to answer this 'simple' question that affects my health so drastically to anyone, including myself?

Well, I answered it today. For some reason, today, after a long day of clinicals, walking out of the hospital, on my way to my car, praying I would make it before I passed out, sipping on my water that just had a whole bunch of salt dumped in it to get my salt and fluid intake up fast...I answered my question without even realizing it...with all the chaos of my body going on, cars passing in front of me, under my breath I whispered "Damn, that was fun."

And I started bawling. That was the answer. 4 little words. After 4 long hours. After 3 weeks of not knowing why. It was such an easy answer. You see for 4 hours a week, I get to be a productive member of society. And I really, really miss that. I really miss feeling useful. I really miss feeling needed.

For 4 hours a week I get to pull my hair out trying to remember equations I learned 3 semesters ago and put them into use. I get to try to figure out what diet is best for this patient, what diet is not so good for this patient, is this patient going to even listen to me no matter what I say. I get to try to do math I can barely do because I have no oxygen in my brain because I've been standing up for far too long and all the blood is pooled in my feet. I get to look at labs while I'm trying to fight off the hot flash I'm having from the drop in blood sugar I'm having. And I love every second of it. Those that I can remember that is. ;)

For 4 hours a week, I get to be the person holding the chart. Not the person that the chart is being dictated about. I get to be the one making the medical decisions. Not the one the decisions are being made about. I get to be the one looking at the labs, not the one getting the labs done. I get to be the one making sure the patient is eating properly. Not the one getting checked on to make sure I'm eating and ordering enough food and that my food is the right consistency. Today I got to assess and do a plan for a patient by myself for the first time ever. That means I had to find everything all by myself in the chart, do the plan, find the calorie intake level recommendation, etc and then go in the room and talk to the patient and educate them, and then come out and write my diagnosis, recommendations, and monitoring and evaluation recommendations. And it felt amazing. Maybe that's why I had this breakthrough today of all days. For 4 hours a week, I'm not chronically ill. For 4 hours a week, I'm not sick. For 4 hours a week, I'm not a patient in the hospital. For 4 hours a week, I'm the one treating the patients. For 4 hours a week, I'm the one making people feel better (hopefully). For 4 hours a week, I'm the one that is making the decisions that will impact their care. For 4 hours a week, I'm normal.  And this part of my brain turns on, and I can't turn it off.

Humans need to feel needed. Humans need to have a purpose. We are created to be useful beings. That is why there are so many instances in the Bible where there is mention of doing good work and deeds. Because we are made to do things. We are not made to sit on the couch and do nothing for the rest of our lives. And that is exactly what having a multitude of chronic illnesses at such a young age where you are told that you will never be able to work again does for you. It sucks your purpose right out of you. And with it goes your joy. Even if you don't mean for that last part to be true and do everything you can to make it stop. When you lose your dream job at 26 and then start taking classes for a job that sounds really, really cool that you know you will never be able to work at in the typical way it makes you wonder what your purpose is. Right now, I am not sure what my lifelong purpose is. No. But I do know my purpose for 4 hours a week I get to change lives and do what I would like to do full time for a small amount of time. Today, I don't think I found my purpose, but I think I remembered it. And I know I fell back in love with dietetics. And I know I fell even more in love with God for helping me realize my purpose, especially given how perfectly this fits in with what tomorrow's blog was/is going to be already (stay tuned)! And it caused me to walk out of the same hospital today that I walked out of crying Friday as a patient frustrated beyond belief after another stupid test, bawling my eyes out because I had finally found my purpose there, I had finally figured out that I love being there (as a staff member/student intern/whatever). It's so important to always remember that you always have a purpose, no matter what you think. There is always a purpose for your life. Always. Don't ever forget it. And always go after your dreams, because they just may come true, walking out of a hospital, that you've walked out of 400 times (as a patient and a student), thinking different thoughts, until it hits you over the head about why you are really there.