27 August 2015

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.

18 August 2015

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! πŸ”«

• 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. πŸŒ»πŸŒΊπŸŒ·πŸ’

• 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 isπŸ˜–) 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 πŸ•πŸ–πŸ”πŸ—πŸ’πŸ“πŸπŸ¦πŸŸπŸ£πŸ€πŸ§πŸ­πŸͺ🍫🍫🍱🍰🍯

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.

03 August 2015

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.