SIDS test, Gastroparesis, psych eval. All in a day's work

934: I've been in the valet parking line for 15 minutes! I'm not a self entitled brat, not usually anyway. I just am fully hydrated and really want to be less so. But that ought to be done in a restroom, rather then the driver seat of a car..

1000: whew relief. In a building. With my car safely and freely parked by someone who hopefully won't lose it like I would have!

1005: "hi what are you here for?"

"The annual Christmas party! They said they'd have live koalas to cuddle this year!"

The receptionist looks slightly horrified and also offended that nobody invited her. 

"Um... I don't think that's today..." She was clearly trying to assess my mental health. Get in line, lady. So is everyone else!

"Are you sure? I have the invitation right here!" I replied and pulled my orders for my SMART study. "Oh, you're right. Today is my SMART pill study! I guess the koalas are next week!"

More blank stares.

"No really, Dr. So-and-so ordered this test. I looked it up last night and WebMD knows about it so I know it's a real test! I'm swallowing pills with cameras in them so they can record my guts!"

Alarmed looks, now the lady is poised by what I assume is the panic button. I'm intrigued, will a trap door open in the ceiling and ninja drop in and karate chop my orders in half? I take a half step back (which for visual help, is more like a quarter step back because I have little legs)

"Yes miss. Please go sit down, we'll... Investigate... And call you back up..." 

It's okay, tonight they'll go home and tell heir family about the crazy midget who wanted to cuddle koalas instead of having a photo-op of her guts. You're welcome family.

1050: I'm regretting my shenanigans. But only slightly. Mostly because I think the two receptionists are have a fierce thumb war, then rock, paper, scissors war to see who has to deal with me. I'll make it easier for them, I'll just get back in line. Poor humans.

"We... We don't know anything about this SMART test. But I don't think it's done here." The other receptionist tentatively said. They decided to tag team me. They're both helping me. (Safety in numbers? Buddy system? Who knows.) 

1100: my phone rings. UCI is calling me. Weird. I'm at UCI. I look up to see one of the receptionists in the phone, staring in my general direction. 

"Hello?" (This is much better than the greeting we used to use when we were kids and trying to intercept calls from school trying to report bad grades or bad behavior with "Harry's morgue, you stab 'em, we slab 'em!" That I was tempted to use.)

"Hi, this is J----, I'm the nurse for your doctor. I'm not seeing this test you're talking about. The receptionist felt it would be easier to understand coming from me." She said hesitantly.

"Oh dear. Im sure this is where I'm supposed to go. The lady on the phone told me l was to come to this building, this floor, at this time. She was really secretive about it so maybe she thought I was her drug dealer. I'm not though. A drug dealer. Unless you want some anti puking pills. Except I couldn't sell you much because without them I would barf all over you."

"Really?" She questioned. 

"Well, technically she told me to show up any time Wednesday, Thursday or Friday. So that would have been a terrible drug deal. But otherwise, here, this place." 

"Let me look...." 

I wondered for long it would take me to get kicked out. 

 A moment later she nearly shouted into the phone "OH!! A SIDS test!" 

"Huh? No, I was told it was a SMART study." I told her.

"Yep, that's this! You need to go to the main building, next to the ER!" She said triumphantly.

This seemed like a trap. I was told specifically to come to this building, this suite. They were probably going to send me to the psych building...

"I'm sure I need to be here. That's what the lady told me. And she didn't say anything about a SIDS test. And what's more, why are you trying to test me for a sudden infant death syndrome. I may be short and lack certain mature personality traits, but I'll have you know, I'm taller than my 8 year old niece!" (Barely.) 

She sighed. 

A few minutes later, I found myself in the basement of the main building surrounded by people who had the same birthday as me. Not kidding. How we got to talking about it, I'm unsure. But the madness was put to a stop as I was trying to organize everyone by birth year. True story. 

A tall scrubbed man came in, called me by name and told me to follow him. 

"Okay. But you know, I'm not crazy. This all started because of a joke. I don't actually NEED to see my friends with the white jackets. Although, I wouldn't say no to a hug. But from myself seems a bit selfish."

He stared. "What kind of test are you here for?"

"Well, I came to the other building for a SMART study. But apparently I'm supposed to be here. But now they're saying its for a SIDS test."

"Oh yes. That's us." He said, relieved that I was making some sense to him

Another few minutes later and I was in a hospital gown with this beauty in my hand:

Those are markers that will stay in my guts and tell someone that in fact I DO have gastroparesis. They will not decide if I died suddenly in my infancy. 

An X-ray, a few snarky comments and some concerned looks later, And a peek at the orders to make sure I wasn't going to be kept on a mental health hold (turns out it's called a SITZ test. Similar sounds, total different meaning!) and I finally escaped. I mean, left.

I must return on Sunday, to the ER this time. I made them write down UCI Emergency Room With the date and time I was supposed to be there and sign it. But I left it behind along with a fascinating article about gluten-free diets fads. 

And this ladies and gentlemen is why I shouldn't be allowed in public.

Dream Dibe is a dirtbag

Some people have alter-egos. Some people claim voices, blame hormones and PMS or mental health difficulties. Some people cite shoulder angels and Devils for their decision making process.

I try to be pretty honest with people. "I'm kind of a dirt bag, I'm just really good at hiding it!" 

It turns out, my dirtbaggery is conditional. On sleep. 

No kidding.

There was a day that I woke up and my feet were covered in grass, my bed room door was locked and the back door was swinging open. 

"Clearly I was abducted by aliens!" I reasoned.

"Or kidnapped and when they realized that holding me for ransom would not only NOT yield a financial gain, but that they'd most likely end up paying to give me back, they snuck me back in bed before I ever woke up!" I was sure some kind of tom foolery had taken place.

Later that morning, as I was climbing the stairs at work, my Fitbit told me that I had accomplished my daily goal of waking 10,000 steps. 

Weird... I've only been awake for about and hour and a half... I checked my GPS, apparently Dream Dibe was feeing a little cooped up, and went for a late night stroll. A 3 mile stroll. Thanks Dream Dibe, getting my exercise whilst asleep.

A week or Two later. I awoke and something was amiss. 

This says: Dear Dibe. Look down! Do you know where your ring and necklace are? I do. Good luck. Game on! Dream Dibe.

Sure enough, when I looked down, my necklace and my ring were missing. I searched everywhere and a few days later, I found my necklace folded up in a pair of socks. The ring is still at large. 

A few nights ago, I dreamed a dream. A dreamt that my arm had been amputated in a horrific accident, after a quick recovery, Dream Dibe was angry. Angry and bitter. Not because of an amputation. No. Dream Dibe was pissed because she had an Arsenal of great one-legged jokes and zero one armed jokes. She was angry that the right limb hadn't been destroyed.

So there you have it. Dream Dibe (much like Awake Dobe) values a good joke over necessities like walking. 

Fence sitters for Christ!

ToWhy should we read the Scriptures or go to Institute? Because that's how the Lord speaks to us! That's how we are protected!

Last night in Institute we talked about how we can have a stronger testimony of Christ (by studying daily from the Scriptures.) Then seemingly out of the blue, our teacher asks "Do you think there were fence sitters in Heaven?"

My heart started pounding.

You see, when I was a teenager I was assaulted. I responded in the only way I knew how, which was to completely shut down. I reached out very timidly for some comfort and was told that sometimes "these things happen because of something you need to repent for."

Now, I was 17. Shy. Well behaved. I was a good kid. "Then maybe this happened because of something that you are..." Was the reply.

I was devastated. And from that moment on, I was convinced that I was inherently evil and somehow managed to sneak by and convince Jesus that I was on His team, versus Satan's team. For years, I've studied about the war in Heaven. I've studied about the Plan of Salvation (for more information on these and many other topics see Mormon.org) I wondered if I could be part of the 1/3 hosts of heaven that were cast out but somehow managed to make my way here instead.

Why do I go to Institute? Because my Father knew that underneath my hope and faith, there's always that seed of fear that I am not a good person. That I am inherently bad. 

"Were there fence sitters?"

"Have you ever wondered why you were sent to Earth at this specific time? ... you are a choice spirit who has come forth in this day when the responsibilities and opportunities, as well as the temptations are the greatest... You [are] worthy and willing to carry on the responsibilities of building the kingdom of God and preparing the World for the Second Coming" Elder Neil L. Anderson.

Would the Father send a fence sitter at a time when He needs His people to be "All in"?

This may sound rudimentary to most, but after years of searching and studying and hoping and praying, now I know that I wasn't a fence sitter. I am all in. And I always have been.

That's why I go to Institute. And why you should too.

When life gives you sun flowers, turn to face the Son!

I've been home from my two-and-a-half week stay at the hospital for almost a month and each day, I'm grateful for things like showers, clean underwear, working WiFi. Sleep.

I'm grateful for friends and family, movies and crafts, books and homework. 

I'm humbled by the support and love I've received, the books, the crafts, the thoughts and the prayers. I'm grateful for each Priesthood holder that offered to give me a blessing. I'm grateful to each person who spared a thought, who sent a text, who made a phone call, who offered a prayer on my behalf. I am so grateful.

The last almost month has been. Eventful. I've had one doctors appointment, one test, I've spent hours on the phone with insurance as well as in attempt to schedule an appointment with a motility specialist. I've had my medications changed, seen miracles happen and plans fall apart.

I've fought with insurance and the doctor to keep my prescription of Zofran from emptying, I've fought the good fight.

I have been protected, and loved on, entertained, pacified, calmed, and comforted. 

I have found peace in the Scriptures. I have found solace in prayer. I have found that if you tell your best jokes to Father, He will make you feel funnier, if not to anyone else, than at least to yourself. I have found more comprehension in Gospel studies. I have found time to devote to my Savior. 

It hasn't all been roses. I've been to the ER, I've been discouraged, frustrated and in pain. I've hugged the toilet through the night, praying the dry heaves will stop long enough to get some sleep. I've thrown up so violently that I'm pretty sure my toe nails managed to be ripped through my body and out of my mouth. I've gone stir crazy from feeling well enough to be out of bed, but crummy enough to be unable to go out and do real life things. 

But in this process I've learned a lot! My stomach empties faster than my intestines. I am slightly obsessed with all things pumpkin-flavored this autumn. I've learned that Swiss Miss vanilla pudding is the best, but darn near impossible to find. Peanut Butter was an addiction before, now it's a staple in my diet. This is evidence that The Big Guy loves me! I've learned that Ensure is gross, and Orgain is delicious. I've (sort of, almost) learned to quilt by hand! (Next is a jean quilt, so if you have any jeans that you want to donate, I'm accepting!)

There are things I never would have learned without this fun experience with Gastroparesis and Enteroparesis. There are people I never would have met. I can't say that I would have picked this path if it had been up to me. I probably would have picked the path littered with unicorns pooping rainbows and butterflies. Alas, I got the path littered with projectile vomiting, incredible people, faith I never could have expected.

Also, I've learned to love bananas.

Yeah. Miracle.

My latest trip to the ER. My little friend there kept going in and out of Bigeminy. 

Then they brought in the Pediatric crash cart. They SAID it was because I had the biggest room and they needed a place to put it. I maintain that it was a short joke.

My Boulder fell out.... Socks and flip flops. Well. I guess you can take the Dibe out of Boulder.

There were many students. Med Students, Nursing students, EMT students. It was fun to watch how the shine of the shoes differed with seasoned medics versus green green EMTs. 

When love can change the world

Today, I am grateful for good attitudes and happy dispositions. While I was in the Emergency Room at the beginning of this month, there was a patient there who was told that he could lose his eye due to the injury he sustained. He was a couple of rooms down from me. ("rooms", he was a few curtains down from me.) And the only complaint he uttered was that of pain. Rather than whine and curse the heavens like many other patients were doing, and in spite of the pain his injury caused, he was making so many one-eyed jokes. He laughed about his predicament. He was a pleasure to be around. How grateful I am for that experience.

*****************

This week has been a great one. Becca and I had planned a week of adventures and fun. Then I got sick and got to watch Becca having a blast from the sidelines. 

A couple of things we got to do together was to go to the Holocaust museum and the LA temple. This week has reminded  me and testified of the love the Savior and Father in Heaven has for us. ALL of us. I am so honored by His grace. His mercy. His love. 

On the other hand, I'm often surprised at the frailty, the cruelty and the indifference of the human family. Sometimes, people will step up and change the course of history by the incredible good things or incredible bad things. 

I learned today of Germany stepping up incredibly and being genuinely human. Loving their human brothers and sisters. When confronted with refugees, they have not refused them or rejected them, instead they have asked "how can we help them feel safe here."

The World is changing. Enemies cease to be enemies and become friends. Friends show their colors in adversity. 

What Becca has taught me, along with current events, history and the Spirit this week is to love. Love my brothers and sisters.

Curveballs, blood clots and blessings

Well, life has sure thrown a curveball my way. I'd say life gave me lemons, but then I'd have to lament about how much I miss that sour soul-curling wonderful-ness that is lemonade. So instead, you get a baseball analogy. 

Rest assured, I couldn't throw a cotton ball right now, let alone a curveball. 

About 2 weeks ago, I was part of the "minding my own business" club when all of a sudden, my body decided it didn't want fluids anymore. It wasn't enough that my stomach is lazy, but it also opted to live the life of dehydration. Woohoo! 

So 2 days of no food and no water, one call to the doctor and 8 hours in the ER later, I ended up being admitted to the hospital! 

These were snapped in the ER.

Let me take a moment now to say how lucky and blessed I have been. So many people with gastroparesis are not diagnosed until their first or second hospitalization. I have been diagnosed since January or and this is my first hospitalization. In addition, while I've lost nearly 50lbs since my symptoms began, I am not so thin that you can see all my bones. Because really, bones scare me. Yikes.

But anyway, I digress. While in my lovely stay here at the Inland Empires finest community

(This is my sarcastic face) I have had about 13,000 tests. And about 12,000 complications, because. Well. This is me we're talking about.

Here has been my stay, bullet style! 🔫

• I still have Gastroparesis. While this is not a surprise to me, I am happy to get this diagnosed again. Confirming that I am not crazy. My guts really are lazy!

• In an effort to treat me and get me home, my physician ordered a PICC line. (A peripherally inserted central catheter (PICC or PIC line) is a form of intravenous access that can be used for a prolonged period of time (e.g. for long chemotherapy regimens, extended antibiotic therapy, or total parenteral nutrition).) This line was inserted in my right arm, 

And I was to get TPN - Total Parenteral Nutrition to feed me. But. Because this is still me which we speak of... Less than 12 hours after the PICC was placed, I developed blood clots. Of course I would. So out the PICC came 

And onto blood thinners I went. And then all my veins were like "hey, we don't want to work either" so they all decided to collapse or blow anytime a line was placed!

Which kind of puts us in a difficult place. I need the nutrients, but another PICC line is out of the question for right now, but I don't have a standing line. So hey, I may get pretty skinny!

We should hear tomorrow about a transfer to a better hospital or if I get to go home! 

• I am a one-of-a-kind patient. Which is doctor speak for "we have no idea!" Not only do I have Gastroparesis, but I also have Enteroparesis. My stomach is lazy and so are my small intestines! No idea what the treatment plan is for that but I have my handy dandy guide

And I'll just have to modify to make my guts start... Gutting? Is that a thing?

• I have come to love the smell of fresh flowers! 

I have been spoiled. 🌻🌺🌷💐

• I have had 5 roommates so far. 4 have had to have gallbladder surgery. 3 are new moms. I was unaware that birthing a baby makes your gallbladder go kaput. So maybe that can be fixed? 

• I've had some awesome nurses and some punks. 

• I am convinced that a shower can fix a lot of things. Gastroparesis and Enteroparesis are not one of those things. Because. Well. Those are two different things. I'm not sure how to correctly pluralize that sentence grammatically.... Nevertheless. I showered for the first time in a week and a half. I feel like I washed away Ebola!

Look, I also have no lines! (Look how swollen my right hand is😖) my last two lines blew. Yikes! I think I get to go the night without a line and they'll try again tomorrow. Maybe with an IJ (internal jugular) Lance!! Come to CA and start this line for me!

A small tangent about IVs in the hospital. In the ER, they started a 20 gauge IV. 

, which is the pink one. That is a reasonable size for all the drugs and medications they give me. Nurses here are terrified of anything that isn't yellow or blue. Unfortunately, because my TPN is thick, every IV has infiltrated and I now have nothing worth sticking until my veins can heal. In the ambulance, we rarely start anything smaller than an 18. At least, I rarely did. I've learned an important lesson. There is no pain difference between a 24gauge IV and a 14 gauge. Both pierce the skin. The pain comes from the skill (speed at which) the person who is poking you has. If they go slow. It hurts. If they try locating blood in your nervous system, it hurts. But the pain isn't worse if they use different needle sizes. At least in my experience. Which after the week I've had, I'd say I'm almost an expert. (Level Expert comes once I learn what the real name of the hand cuff vein is.)

People keep asking what they can do to help. First and foremost, I hope you know how grateful and humbled I am that you want to help. Second, go read Ephesians  1:16 and know that that scripture was written for you. I make sure to thank my Heavenly Father all day everyday for you. All I need are your prayers. Some of you may not be the praying type. Pray anyway. Not for me. Pray to talk to the One who can fix everything. Pray to the One who loves perfectly and judges righteously. Tell Him your worries, your desires, your fears, your failures, your triumphs. Tell Him everything. Jesus Christ is real. He has borne all for you. He has borne all for me. And everything, EVERYTHING that has been lost because of mortality will be made right through the Atonement of Jesus Christ. That is a promise that you can hang your hat on.

This means, I will get to eat a lot in the hereafter. I hope there is lots of bacon and pizza and fish and sushi 🍕🍖🍔🍗🍒🍓🍍🍦🍟🍣🍤🍧🍭🍪🍫🍫🍱🍰🍯

If you find yourself in the area, I'd love a visit! Or if you can spare a moment I'd love an email or a text or a phone call! Being stuck in the hospital can get pretty lonely.

Here are some other pictures so you can experience some corona regional goodness! 

Job knows what's up ❤️

Kelly came and painted my toes and rubbed my feet. Just because! 

Some art to decorate my room ❤️ I have many more open spaces. All homemade drawings are accepted! 

First hair wash! That was an experience!

I love that they put these for fall risk patients ❤️

This painting depicts the Savior guiding a surgeon in what appears to be a major surgery. 

Jesus the Christ is in fact the chief of all medical staff. He decides when it's my time to go home to Him. He decides when I'm well. No physician here can take His place or change His say. 

Ultimately, when all is said and done, I have been blessed with so much more than I deserve.

Thriving with Gastroparesis

Gastroparesis is something I had never heard of before 2015. Although symptoms started a year ago, it took almost 6 months to convince the doctors that I wasn't bulimic, "overly stressed" or faking it. It took a potassium level of 2, vomiting blood and collapsing at a teaching appointment for people to realize I wasn't nuts. 

I have been pretty irresponsible with my condition. I've figured "well, calories just don't count!" So I'll eat what I want, whenI Want, and then just wait to puke. It turns out, that's really bad for your heart. Who knew?! (Answer: everyone.) 

I researched enough to know basic medicine behind this largely misunderstood condition. That was it.

Then I had that wake up call. I need to take my health more seriously. I guess I just didn't realize how serious this can be.

So I looked up some diet changes, lifestyle changes and treatment options and I dove in. Sorta.

The first phase, liquid diet + stress management + liquid vitamins + journaling

Phase 2, milk products, fro-yo and eggs as tolerated. And cream of wheat. + phase 1 + 20-30 minutes of walking everyday

Phase 3, phases 2 and 1 + up to 40mg fat and fiber daily. Basically no more fresh fruits or veggies, no cakes or ice creams. That makes me so sad. And once I get to this stage, no gluten.

Day 1 of the new diet: 7am I can do this. I got sports drinks, vitamin waters, and my one cheat, milk-based protein drinks (Atkins strawberry, if you're wondering). I'm ready for the day! Oh, don't forget my vitamins.

7:20: I have to leave in 10 minutes and my vitamin potion looks and smells like a liquified compost heap. And I have to drink this?

7:26: ... I'm stronger than these vitamins.... I can do this....

7:29:30: I literally have to walk out the door right now. Ready.. Go!!!

9 am: I. Am. So. Hungry!

12: this is it. This is how I'm going to die...

3: am I being dramatic? ... I don't know, but I should write out a will. (I want firecrackers put in my pockets if you decide to cremate me. The person who stays the longest at my funeral, gets my stuff. May the odds be ever in your favor.)

9pm: if I sleep, I won't care anymore about the hunger...

Day 2

I dreamed of food last night. It was delicious. So so delicious. 

Made it most of the day without feeling like dead. So I celebrated by eating an ice cream the size of my head. 

Oh yeah, so that's why I need to be on this diet.

Day 4

I ate like crap yesterday. No really. We had a big dinner. Buffalo Wild Wings were on the menu. And a chocolate cake that I would have been happy to face dive, like that one kid from Matilda. I definitely felt it today. Heart pain, regularly irregular heart beat, Charlie horses across my abdomen. Yeah. It felt lovely. 

Stuck to my diet today.

I even made my own chicken stock. It has some flavor. It's hot. This brings my heart joy. I'll try vegetable stock next!

I found this product online called "tummy drops." I've heard good things about them, so shamelessly, I called the company and asked for some samples so I could try them without investing a bunch of money if it didn't work or I hated it. The company was so kind and sent me some. So far, I really like them! They sent me three flavored, peppermint, cranberry/cinnamon and ginger. It really seems to help the abdominal pain and nausea. 

I'm hungry, but well hydrated. And my level of angry grumbling has decreased. Now I just snark in my head! 

So, I am collecting good juice recipes, and low fiber/low fat gluten free recipes. If you have any, send them my way! 

I have a goal: I want to do more than just live with Gastroparesis. I want to learn how to thrive.