Holding Steadfast onto Hope

A 22 year old lady who happens to use tumblr as her venting outlet for gastroparesis and celiac! Diagnosed Summer 2013, loves humans and inspiring things. Read on if you desire, starting from the earliest post will make the most sense (:

[livingbeyondwithguts]

When I'm fine.... and then I flare out of nowehere

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well, i had plans. 

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friendships when you get sick, and stay sick.

i've been sick for what, 8 months now? i guess? 

and i have discovered something. actually i discovered it months ago but every day it proves itself more and more true. none of your friendships actually change when you get sick. all of your friends stay the same. you just realize what that means, exactly. i will tell you.

that means that your wonderful friends will remain wonderful. the fact that you are sick won't push them away, it will draw them closer. they will offer you rides when you are dizzy. they will offer, and then, insist on coming over to your house when you are sick, bringing board games or going into your movie closet. they will buy gluten free food and keep it in their fridge for when you come over. they will call you, and keep calling, even when you don't always call back. this will mean the WORLD to you. not that it didn't before, but it takes on a whole new meaning when you are limited in what you can offer back to them.

your normal friends will stay normal. this is fine. they are the friends meant for fun, and the occasional deep conversation. they won't abandon you because you are boring now, or can't always attend the friendship outings. they will text you and keep inviting you, and they will acknowledge that they miss you, as you have missed them. they won't go out of their way to be supportive, but they didn't before. so it's not a big deal. you appreciate these people for maintaining your normalcy. and for drinking alcohol at parties, and not laughing at you for drinking gingerale, but for still inviting you to bars to hang out. 

your fairweathered friends will stay fairweathered. they weren't always "there" for you before, and they certainly won't be stepping up. depending on how much you care about these people, despite their fairweathered tendencies, this will hurt.  somewhere in your brain, you had hope that maybe, since you are less capable of things, they will seize the day, as it were, and become wonderful. they will not shock you. you will not suddenly become a priority because now you are ill. get over it. or don't. this is one of those situations where you are allowed to be hurt, but you should not have been surprised.

there is one thing that i failed to mention earlier. there is, in fact, one thing that will happen when you get sick, and stay there. when you get sick, you will be contacted by strangers. people you talked to a couple of times. these people will come out of the woodwork and be spectacular. they will tell you their stories. they will relate. they will become your new #1 fans, and your friends from before will have no idea why they suddenly like every random facebook status, every photo of you smiling. the amount of these people will swell when you first get sick, and bombard you with support and messages. but the crazy thing is, they don't stop appearing. eight months in, and i am still getting facebook messages and letters. of new people who have been following my story all along, and want to say hi. or want to share their story. these people are incredible. and yes, they will make your fairweathered friends seem even more crappy, because now strangers are there for you, and becoming your friends, and are superceeding the people you once called friends. but accept these new people. whether they are here to stay, or here just to support you through this crazy journey called "long-term illness," is yet to be seen. all i can say is that i am grateful, for all of them. 

[steadfastontohope-blog]

I can LITERALLY feel things inside of my intestines. SO FREAKING CREEPY, STOP. 

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my organs and i have a love/hate relationship.

Womp Womp. There goes a week of struggs. Last week starting with last weekend was fairly epic, involving being trained as a Grief Facilitator for New Hope for Kids, seventy thousand birthday parties, and mo’ volunteering. And then I had a grand Friday night with one of my best friends, Michelle, and a few hours Saturday at Disney with both some close friends and people I rarely spend time with. Sundays, I usually volunteer at the FHFC, and then I initially had plans at night, but even on Saturday night I mentioned to a couple friends that I felt a struggsville coming on. I couldn’t figure out if I was fighting off an illness, or I had one, or my body was sick of having fun, who knows.

AND THEN SUNDAY HAPPENED and since then I have been a puke machine of epic proportions, I mean multiple days of keeping down around 100-200 calories total and losing about a pound a day. I actually tried to do my grad school homework at one point and was unable to concentrate before I realized I had NO NUTRIENTS TO FUNCTION ON. By Wednesday morning I was feelin’ a bit woozy so I just had two of the besties over for a game night where we happily sat in bed and played Disney trivia (and princess candyland which is the best thing ever). Wednesday night I actually had some improvements so today I was able to go shadow the Child Life team at the hospital. FABULOUS EPIC DAY. Then I came home and actually ate solid food (instead of the pediasure/3 pain and nausea pills that were my breakfast) and puked, and then went to class haha. I know. It’s an issue. I have a problem with making short term solutions which don’t function in the long run when I want to have a good day/morning/whatever.

But I had SUCH a good time at the hospital today shadowing and SUCH  a good class and I LOVE New Hope for Kids and I only get depressed when I can’t do the things I want to do and I was able to do a good deal of them somehow. Who CARES if I’m like 9/10ths dysfunctional the other days…again. I know this isn’t a solution. But I do the best I can, and sometimes, it’s this.  It’s hard writing emails to volunteer coordinators saying I’d like to pick up more shifts but I know I’m probably not capable and would end up calling in more. It sucks because like in real life I would be working a 40/hr week JOB and I’m sending an e-mail saying that I can’t give into the temptation to PLAY with KIDS for another TWO HOURS a week.

But it’s where I am right now, and that is just ok.

NEGU.

[steadfastontohope-blog]

find something wrong with me.

My title is a misnomer. I know that something is wrong with me. I puke all the time. I don't poop without laxatives. I've lost 20 pounds since the first week of July (and more in between June and July but I didn't own a scale...) I'm too weak/nauseous/faint to work. I can't eat food with a reasonable fiber or fat content, oh or gluten. But doctors can't find anything wrong with me.

Temple University/ UF Shands/ Center for Digestive Health/ primary doctor/ ER departments/ Center for Infectious Disease/ OBGYN/ Ear, Nose, and Throat Specialist

None of these doctors can find anything wrong with me, well besides my symptoms. I don't have stomach cancer, or diverticulitis, or rheumatoid arthritis, or anorexia, or gall stones, or an intestinal obstruction, or delayed small bowel emptying or a thyroid issue or lymphoma or lupus or sjogren's. Today I was tested for ovarian cancer, of which I have all the symptoms of....

Good news, I don't have cancer. I wish I cared. I wish I felt relieved.  I wish I was glad I don't need a hysterectomy, or chemotherapy. But I mean, who needs ovaries? And at least, maybe, the chemo would fix me...if I had ovarian cancer, that would explain, all of this. The last 7 months. I'm pretty sure my manager at Disney doesn't expect me ever to come back to work, or even contemplates my existence. 

But I don't have ovarian cancer, which is good. I accept that as good, it just doesn't hit my emotions like it should. I get told I don't have different types of cancer every other week. My OBGYN told me to go to Mayo in Jacksonville. But, my GI doctors in Temple are better than Mayo Jax, at least by research and information, and I just spent my Christmas up at Temple having probes stuck up my ass and eating radioactive sandwiches and blacking out in their bathrooms and hearing a world-renowned doctor tell me that my WEEK OF TESTS are all normal and he doesn't know what's wrong with me, that "there's a lot we don't know about the gastrointestinal system," that "don't worry, we're just going to treat your symptoms so here is a higher dose of your antinausea medicine and a laxative that's been out for a year." 

Even my gastric emptying tests, the ones that I am always cracking up because I've had 3 of them and I am turning into Spiderman...they were normal. Which means that even though I am being treated for it, I DON'T have gastroparesis according to the classic tests. So my stomach may or may not be paralyzed, but I am in a support group for it, because it follows my symptoms, and I need people to empathize with it, and I have met (both in person and over the internet) some great girls with it, but now I don't even know if that's my issue at all. And again, this is, it really is, good. Because I don't need a pacemaker or to get the nonworking pieces of my intestines removed. Cause they work? But, they don't, though, or I wouldn't still be throwing up 5-7 times a week....see where the frustration is? 

Oh, that laxative that the Temple doctor gave me? Three doses in, I was laying on my friend's bathroom floor wondering which one of my organs was going to explode first. I then proceeded to have every side effect that justifies an ER Visit. Did I go? Nah. I'm used to the knowledge that my body is truly just a sack of organs. A fucked up sack of organs, that can give me so much pain that I may quite seriously not be able to get off of the floor, and I have perfected the art of throwing up into a trashcan while lying down. And I know the feeling that even if I should be going to the hospital, there is no way to get me off the floor, so we might as well wait until the moment passes.....

I'm not saying any of this for pity. I know, so many of you are reading this thinking "Michelle's finally depressed, I was wondering how long it would take...oh nooo." Na, not even.I'm heading to Mellow Mushroom with some of my best friends and gonna eat 1 slice of gluten free pizza. Will I throw it up? Maybe, but like, screw it. Gotta live. And then I'm heading to UCF to pick up my ID for grad school (taking one course). I'm getting trained this weekend to be a Children's Grief Coordinator at a nonprofit I've wanted to volunteer for for ages. I just can't bring a pediasure to drink anymore, because I've become intolerant to them, apparently. All of these thoughts are the ones going through my mind.

I have accepted that my body is a screwed up sack of organs. I'm actually sort of okay with that. My life is still a life, is still quite a nice and full life. Do I wish I could work a job full time and like, move out of my house, and eat what I want and have a wine at dinner and experience the sensation of being hungry again? And delete this blog once and for all? Yeah. I do. But that's not reality. So as humans, you adjust. God is still good. And I have a great family, both immediate and extended, and I haven't lost one friend even though I am always texting people saying "Getting home videos from the camera stuck up my ass today!" "Oh I might have ovarian cancer but don't worry" "Since I don't have a prostate, this test won't be any fun for me." Because I'm still Michelle.  

Also, my doctors are very nice people. One of them who saw me through my lymphoma scale and has been seeing me since July is intense and gets openly frustrated when he can't find any problems. My Temple GI is the most gentle human alive and also very smart, but just can't find anything. My OBGYN literally said that he WISHED he had found something during my exam. Who even says that? I'm pulling heartstrings, man. 

I just want them to find out what is causing my organs to like, not work. So maybe I can fix them, or not. Or at least put me on the show Mystery Diagnosis or Ellen Degeneres. Honestly. 

NEGU. 

[steadfastontohope-blog]

goodness, it has been a while

LONG STORY SHORT SINCE MY ULTRASOUND....

ultrasound came back normal on that friday, but sunday i threw up things that a person should never ever throw up so we took lil' old me to the emergency room. 

turns out my lack of pooping for over a week like made my body give up on being a body. ER docs knew nothing about gastroparesis so they "suggested i increase my fiber intake" LOL ASSHOLES.

So after the ER let me go with a $15,000 bill (thanks insurance) and some nice IV zofran in my system but without fixing the problem at all, we called my Gastro who prescribed me some legit medicine and my body has been ok. Thanksgiving was shaky but we got to go out for dinner and I took a gluten holiday (half masochism half "I'm probably going to throw up anyway so yolo) and ate a couple rolls which were glorious. And I didn't throw up, since I only ate two rolls and a teeny piece of turkey. Maybe they've got it wrong and my body like, desperately craves gluten HAHA.

Then went on a puking spree for a while the next days which was a shame and apparently my intestines might not work right so instead of going to a Sara Bareilles concert, I'm gonna go to Temple (up to Philly for Christmas) and get lots of radioactive things up in there and a camera up my butt (help) and some more lovely things. All I want for Christmas is a colonoscopy? Right. 

NEGU.

[steadfastontohope-blog]

this is the sassy face of someone who woke up at 6:00 a.m. to eat an egg and drink some water because I now am fasting till when my 3:00 PM ultrasound is done. time to find out if my gallbladder is done being a gallbladder.

KBYE

[steadfastontohope-blog]

SHOUTOUTS.

i really needed to make this post.

four people (besides family) have been the MOST there for me through all of this shit. both physically, and helping, and supportive, and loving, and everything and more than i deserve.

KAMI SPAULDING, WENDY DIAZ, MICHELLE ASSALY AND KEVIN SCARLETT ALL DESERVE AWARDS AND LOTS OF PIE FROM MY MOM AND FRIENDSHIP AND ALL OF MY THANKS AND LOVE. From taking me to CT scans, to being willing to wheel me around the polynesian, to taking me to gluten free sandwich places, to being excited, to handling my emotional texts, to visiting me in PA (with cass, due credit to her lol <3), to still wanting to hang out with me, to stopping by my house on the way MOVING TO NEW YORK CITY,  to constantly calling even if i don't answer, to driving me places,  to texting me gluten free recipes for tiny desserts, to watching movies when i don't feel good enough to go out or playing candyland when i'm too sick to volunteer, to sending me arts and crafts, to hugs, to texting me constantly normal everyday occurrences. 

i love y'all. so much. (i also love lots of other people don't get me wrong but these four have LITERALLY done all of these things and they mean the world to me and i just love them and people need to know that they are actually angels. 

[steadfastontohope-blog]

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i have a nice blue gatorade flavored ice block. it was probably a slushie at 3am this morning.  just asked my mom if i could have an ice pick to eat it with. she said "we don't live in alaska"

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gave the lab a script for all sorts of thyroid markers, t3, t4, tsh, etc. what we really needed was the t3.

PRETTY CERTAIN they checked me for THYROID CANCER INSTEAD OF T3. 

Check off another type of cancer I didn't think I had and don't have. Still no checkmark in the T3 box though. Oh wait. 

Medical frustrations. I'm sorry if this post looks like it is in Japanese. It's in medicine. I am now slightly more fluent than your average layperson. 

Keep in mind that my thyroid was .1 away from being out of the normal range, basically meaning that it isn't normal. Silly thyroid. 

[steadfastontohope-blog]

i am going to get a shower while listening to ingrid michaelson

and afterwards i will try and eat a bowl of white rice but if it fails it fails. and after all of that i will be very proud of myself because i have a virus and a semi-paralyzed stomach. 

and i just extended my medical leave until january 9th. my life is on pause. but i am doing small things while it is on pause. and apparently i don't have some of the autoimmune diseases that i thought i had so here's a balloon for me. 

[it-aint-me-see]

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lolllll waiting on my blood tests to see which autoimmune diseases i have...lolllll

[aintitgrand]

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YEP, got a virus. Thanks for the second illness, along with my chronic one, universe. Really 'preciate it. 

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The Florida Hospital called me last night asking if I could volunteer today for a special event, had to say no, too sick.

Just called Give Kids the World and canceled my volunteer shift tonight, too sick.

Take away my social life? I get fairly sad.

Take away my ability to volunteer? I GET ANGRY.

FUCK YOU, GASTROPARESIS. FUCK YOU.

[spongy-moments]

[steadfastontohope-blog]

FLAFLA, and the return of the to-go box collections.

So. It's been a while. Lo siento, or sorry, in English. I never ever wanted to become one of those bloggers who "blogged" just to have something on their website. I have always written, whether poetry, or stream of consciousness, or blogging, but I never write when I don't want to write. So hello, to my loyal followers (lol). A lot has occurred.

I am no longer in the same state, for one. It's warmer here, and I have far more friends and far less relatives. 2/3 of my gastroenterologists are here. Yes, I have three of them. Oh and 2 primary doctors and 1 allergist. But ANYWAY, I came to Florida and then my precious car battery died because I was too lightheaded to use it and then I fled the state, so it had to get jumped. And then I spent a day chillin in my screened in porch reading a book. 

Then I went back to my ole alma mater, Rollins College, which holds all the joyous memories of my college days and I actually hadn't been back since the day I graduated in May, oops my life went to shit about a month later but ANYWHO. People were surprised that I could still walk, and I only secretly puked once after having apple juice. I think I'm developing a slight sensitivity to super sugary things which is quite sad. But I had a great time, as many of my friends are still seniors (and a couple juniors and below) there. I had been gone a couple of months, so it was awkward that I was like "visiting" but now I'm back for good so I just want my life to be as normal as possible and I am really really looking forward to NORMAL hang outs, not reunions.  

Also I am going back to volunteer on the peds surgical floor of the Florida Hospital for Children and I am obsessed because the coordinator (love her) realized that the Child Life Specialist on the floor ALSO has gastroparesis and we are going to be best friends apparently. All about it. RIDICULOUS. 

Then I went out to dinner with one of my closest friends and everything in life made sense, even down to the fact that he ordered like a pina colada and ate like an entire loaf of bread. Believe it or not, the fact that he did those two things while knowing that I could do neither gave me the most normalcy I've had in ages. Did we pick a place that had a gluten free menu so I could actually eat? Yeah, duh, but he didn't like FEEL BAD that his organs can actually consume bread and alcohol which was so excellent. NORMAL. Especially since I heard that for a party coming up, people were discussing how to be super sensitive around me. Let's face it, I can eat like 5% of all things in the universe. So I had heard that they were planning on not having snacks since I was going to be there. Like, what? I don't desire for others to starve just cause I can't eat nachos. When I was in PA,  I went out with a bunch of people to a BREWHOUSE, where they all ordered beer.  I got an iced tea and was the happiest just to see everyone. 

Speaking of food, my parents really prefer the restaurant options in Florida to the ones in PA. Due to the fact that I do nothing, I've been able to do research on places that have gluten free/gastroparesis friendly food options so I've found some good ones. This means, basically, that a place offers fish, rice, or gluten free pasta. So when the miracle occurs that I can actually eat at all, I eat these little tiny nugget portions and end up with a full to-go container, THESE ADD UP. And then I have days where I can only have liquid nutrition so the to go boxes sit there, uneaten, fo days. We have started moving some of them to the freezer. 

Due to stress combined with having a day where I woke up feeling like crap anyway, I threw up gluten free pizza today. So sad. R.I.P. My day was pretty bad but then I listened to Jesus Jamz on the radio and found out that Disney (the most accommodating to gluten free in all of the land) has gluten free beignets along with all sorts of other gluten free desserts...now I just need to be able to eat sugar successfully. 

Went to the Food and Wine Festival at Epcot, had a bottle of water. YOLO.

Michelle out. (: