Peace: It's not what you expect

I've been thinking a lot about Peace lately.

Whenever anyone goes through a hard time - personally or seeing someone they love going through something - we often ask for prayers for Peace. 

I have asked for lots of prayers of Peace lately.

The thing is, I don't think I really knew what that would feel like.

Peace.  

What does that really mean to a person going through something life-changing and difficult?

Well, here is what I've learned:

I have come to realize that I have found that Peace.

I have anxiety at times.

I get frustrated and sad.

I have moments where I want to throw my hands up and just give up.

Don't assume that Peace means everything is suddenly OK and all those feelings of fear, concern, anger, etc. are suddenly, magically gone. 

We are humans after all. We need to give us all a break.

But here's how I know I'm at Peace...

Right before Christmas I went on a very important errand of picking up bacon for the dish I was making for Christmas dinner - serious, important stuff.

It was snowy and icy on the roads, but let's face it, good bacon is worth it (vegans/vegetarians may not get this, but trust me, it's true).

I came upon a red light and with more than enough time/space, I pumped my breaks. Clearly my wheels hit ice because the breaks were all "um... nope." So I started to slide. 

Normally in the winter when my wheels catch and I slide a little I start shushing the car. No joke. I adjust the wheel as need and go "shhhh....shhhhh....shhhhhhhhhh" until it straightens itself out. It works 99.9% of the time! 

(I really mean to say 'shit' over and over again, but it just turned into shushing and I like that better).

This time, my shushing did nothing. My car was all "yeah, I get it, but no. I'm just going to go with this." Before stopping my car was completely perpendicular and there were a ton of cars around me. Thankfully, no accidents and everything was fine.

I've been in situations like that before and as the car turns and I'm out of control with other cars all around, my heart races and I internally freak out even though that does nothing - I have no control whatsoever.

This time, I did what I could and once I realized I couldn't do anything, I just let it happen. Obviously prayed for safety of the cars/people around me, but internally I was just like "ok, whatevs." No heart racing, no panic, no fear. Just whatever is, will be. I was at Peace.

I recently had my first trip out of state since my diagnosis. Our trip involved volunteering in Nashville and attending Passion Conference in Atlanta. It was fantastic.

On our last night in Nashville, one of the guys was pushing me in the wheelchair and accidentally pushed me off a curb. 

In a classic moment, the wheelchair went forward and down and I was thrown face first into the street. Honestly, I wish I could have watched it. When I think about it now I just laugh at the thought of the sight.

Normally in those types of situations I would immediately start crying - out of embarrassment mostly, but also pain, fear (there was a car coming my way), etc. 

This time, nothing. I honestly didn't care. I asked that my friend (who felt just awful about it) let me sit there for a moment as I got myself together, but I wasn't upset or embarrassed. I was at Peace. I was fine, emotionally.

The next day I ended up having to miss the first night of the conference because I needed to go to the ER in Atlanta. Totally by myself (I wouldn't let anyone come with me since they'd miss the conference, too) in an ER in an unfamiliar state for an entire evening. I was not freaking out at all. It was what it was and that was OK. I was at Peace.

Finally, I had a dream where I was falling. I'm sure most people have had those. You wake up in a bit of a panic because you were falling to your death. It was scary and uncomfortable.

While in that dream I literally said "let it happen. It's ok. Don't wake up. It's ok. Just let it happened." I was totally OK with whatever was going to happen. Even in dreamworld I was at Peace. (for those of you who are curious, dream me landed and was fine).

So that's where I am. It's not perfect. It doesn't mean that I'm like "yeah, Pulmonary Hypertension, this is awesome!! I love every part of it! Woo!!" If I was like that, I'd recommend you admit me to an insane asylum. 

But I'm OK. Whatever happens will happen. It is what it is. I'll do my best in each day and move on to the next. I'm at Peace.

It's a good feeling. I wish everyone could experience it.

~J 

Hope: The Truth

I interrupt this very irregular "broadcast" with an unusual moment of seriousness. My apologies.

Today I've been thinking a lot about Hope. So I thought I'd share.

Since my diagnosis, I've certainly had my ups and downs emotionally.

Particularly since my 3-week stay in the hospital, many people have noted my positive attitude. They tell me I "look good" and sound "upbeat." Which, as most people would tell you, is important when you're sick. 

And let's face it, I may not always look it, but

I'm sick.

Really sick.

Seriously sick.

This isn't something that is taken lightly by my team of doctors. They like to remind me just how sick I am, in case I've forgotten.

People ask me how I stay so positive throughout this.

My initial internal response is usually one of the following: "I'm positive? Ha! Ok." or "Heck if I know."

But I give them the story about how I told God if I lived through a procedure that wasn't any more risky than any other procedure but could - in fact - kill me if things went bad, that I'd be positive.

And that's true. That happened. I said that and for the most part, I did that.

I mean, don't get me wrong. I have good days and bad days.

(which is really more like "alright days", "crap days" and "really shit days")

But I got to thinking today, what people see as my positive, "upbeat" attitude through this really shit time, all boils down to Hope.

Hope is such a lovely word, isn't it?

It's pretty. It brings about thoughts of positivity, light, happiness, glee, expectation.

The dictionary's first definition of Hope is: the feeling that what is wanted can be had or that events will turn out for the best.

Beautiful.

We all want Hope, in every day things. And people particularly look for Hope in the really crap times.

Hope in itself is positive and grand. But it is what you put that Hope in that really defines how you're handling the situation.

I realized today that I live every day with Hope. Every. Single. Day. 

But not always for the reasons you'd think.

Some days I have Hope in Healing

Hope in Love

Hope in Restoration

Hope in the Future (Hope that it's a long future)

Hope in Adventure

Hope in Life

But here's the truth

Other days, my Hope is that it advances quickly and I don't have to live very long.

Hope in Death

Hope in Relief

Hope in The End

And then of course,

Hope that it's all true, everything I've been taught and believed

Hope in Eternity

Hope in Salvation

Hope in Everlasting (healthy) After Life

It's not what people want to hear. They want only positivity.

Laughter is the best medicine.

A positive spirit will keep you strong.

And it's there, don't get me wrong, mostly I'm right there with you.

But not everyone is positive 100% of the time - sick or not.

I just read the book "A Fault In Our Stars" about 2 teenage cancer patients who fall in love. Super cute, super sad, I'd recommend it, all that jazz. But what I loved the most was how honest the main characters were about the really shit time they were going through.

The fear of being a Grenade - someone who leaves a wake of sadness and pain when they pass and not wanting to add anymore people to the "blast zone" while they were alive.

Honestly not having the energy to keep up the front that everyone expects and to just sit there and realize that "that's the thing about pain... it demands to be felt."

I don't want to give off the impression that I'm sitting at home drowning in my own despair, one step from slitting my wrists. If I was, I would not be writing this.

But that's my answer to why I am positive. Because every day I live in Hope. Most days it is happy Hope, other days you may not want to know where my Hope lies. But in the long run, I'm hopeful.

I am full of Hope.

And day by day I see where that Hope leads.

J

Nurses: Modern Day Drug Dealers

**Before I officially start this post, I'd just like to remind everyone that this blog is rarely serious. I don't actually consider nurses the equivalent of street drug dealers. It just plays into one of my stories. Calm Down.**

One of the best parts of being in the hospital was the nurses. I had tons of nurses during my 3 weeks and only some of them were on for more than 1 shift for me.

I quickly became a favorite among the nurses and techs. This is most likely because most of their patients are either only 1/2 conscious: 

Or in pain and grumpy:

Even when I was in pain, I would smile and joke around. First of all, it's not their fault that I'm in pain and second, that's kind of my thing. I had also decided that if I lived through the heart catheterization (not that there was a lot more risk of dying than any other surgery, but there was a point I hoped I would so...) that I would just go with the flow and take things as they come with a positive attitude.

Ok, I was more like this:

I'd have nurses and techs come visit me even when they weren't assigned to me. Sometimes the ICU nurses would bring someone to my new floor and check in. I had several ask me to come visit - just not stay. What can I say, I'm kind of a big deal!

Anyway, my favorite were the male nurses. Yes, for obvious reasons, but also because they were fun to mess with. 

(side note: when I googled "hot male nurse" a lot of delicious pictures turned up. I got distracted and had to use some sensibility when choosing the photos..)

Who am I kidding? I'm not sensible. I had some attractive nurses, but let's be honest, I would have voluntarily stayed in the hospital if I had the following male nurses:

 
Anyway...

One of my nurses that I had for several night shifts, we'll call him "Brad", was referred to as "hot male nurse" when I posted on facebook. He reminded me of a guy I went to college with, had the prettiest blue eyes and best of all, blushed so easily.

See, the nurses were at work. They needed to be professional. Additionally, these were male nurses, with a young female patient in a private room. It was very important for them to make sure lines weren't crossed. 

I, on the other hand, was not at work and considering I didn't wear pants for 3 weeks, wasn't feeling particularly professional. I also have a tendency to cross the line, so I went for it.

(by the way, I'd never wear those sandals)

Here are my best memories with some of my male nurses:

"Brad"- Brad is my age, has a long time girlfriend and just bought a house with her. They are serious. I am not actually hitting on him, but he doesn't know this and he's still new to the nursing field.

Brad walks into the room as I am stepping out of the bathroom and getting ready to wash my hands.

Brad: Oh, I'll come check you out out later.

Me: You're going to "check me out" huh? ;)

Brad: ::blushes and leaves the room::

 

Brad gets a phone call while he's doing my vitals. Turns out it's his nurse tech arranging to meet to discuss patients. I only hear his part where he says when and where he'll meet this mystery person.

Brad: OK, I'll meet you there in 10 minutes.

Me: Oooh, secret rendezvous?

Brad: ::blushes:: uh...no.

I'm doing a walking test in the hallway. It is almost shift change. I see Brad standing at the nurses station. My mom and current nurse are with me.

Me: Hey! It's Brad! My favorite night nurse!

Brad: ::blushes and turns away::

 

Essentially, Brad's stories aren't super exciting, but you can see how easily uncomfortable he got, which was so much fun!

"Mark"- Mark was my nurse twice. He had been in the nursing field a lot longer. He said he used to be like Brad, but has since relaxed. Though apparently he relaxed a lot more than normal with me. Mark is married with 3 kids and though attractive, not as much as Brad.

 

I had just started on my oral and intravenous drugs. One of the drugs I take is Revatio. The active ingredient is sildenafil, which is also the active ingredient in Viagra. I'm essentially taking Viagra 3 times a day. It makes me laugh **note, I did promise to let the nurse know if I had an erection for more than 4 hours ;)**

 

Mark: Hey, got your Viagra for you!

Me: Best part of my day!

Mark: So I guess if you start getting randy, I should stay away?

Me: Of course not, that's not fun, you should come around more often! ;)

 

Mark brings in my Veletri - my potent, expensive, intravenous drugs.

Mark: I've got your drugs.

Me: Yay!

Mark: You got my money?

Thus, Mark established himself as my drug dealer.

 

(yes, I know they are the cooks, but this picture was more badass than the others I found)

 

I had just taken a shower and needed new LEDs put on. There were 5 on my body - 3 on my chest and 2 on my abdomen. Mark is getting ready to put them on, but it's a guessing game under the gown. I lift up my gown, just straight up flashing him.

Me: Do I get Mardi Gras beads for this?

Later while he is connecting the battery pack and putting it through my gown pocket...

Mark: This is why I took this job, so I could put my hand up women's shirts without getting in trouble (he was kidding).

Me: Well, you got a full on show earlier and I'm still waiting for my Mardi Gras beads!

 

"David"- David was only my nurse 1 day, the day before I left. He is also married and has 2 kids. He was cute, but mainly I was so bored after 3 weeks in the hospital, I just wanted to entertain myself.

 

David removed my picc line in my right arm. He was required to keep pressure on the opening for a minimum of 5 minutes after removing the line and before bandaging it. He stood there and my arm was positioned just so, I was also not allowed to move my arm. My hand however... (also, my parents were in the room).

 

David: Just a few more minutes then you're good to go.

Me: I just want you to know that my hand is in the perfect position to grab your ass.

David: ::laughs:: Uh oh, should I be worried? Should I call my wife?

Me: I haven't decided yet.

My Parents: Ok, we're going to leave and go get some food.

David: What?! She just said she was going to grab my ass and you're leaving me here alone with her!

Me: Oh sweetie, I'd do it with them here, too. They make no difference ;)

 

 

I did not grab his ass, but when he was doing shift change with Brad I told him I regretted it and asked him to come over so I could grab it then. ;)

 

So, the moral of this story is:

1) if you're in the hospital - have fun!

2) if you're alone with me, I'm probably going to be inappropriate at one point or another. Just go with it! ;)

 

J

I'm Pretty Much Iron Man

Well, it's been awhile since I updated and a lot has happened. So lets do a fun update post!

On Oct 2, 2013, I went to the hospital to have a Heart Catheterization done. This was an investigative surgery to see how far my Pulmonary Hypertension was. During the surgery they also planned to temporarily inflate a small balloon to close the hole in my heart and see what would happen.

 

During the surgery my blood pressure and oxygen levels got dangerously low and when they inflated the balloon, my heart started to fail. They found that I was already advanced in Pulmonary Hypertension - Stage 4.

Because of this, I was kept in the hospital until treatment could be started. It should be noted that my condition can be treated with medication, but there is not currently a cure. The medication is only there to try and stabilize me. If there happens to be improvement, bonus, but the ultimate goal is just to stop further deterioration.

I was in the hospital for a total of 22 days. A lot of that was waiting for the meds to be approved by insurance and monitoring after starting the meds. Currently I am on 7 medications, 6 are a cocktail of oral drugs and 1 is an incredibly potent and dangerous 24/7 intravenous drug. I mix the meds myself and there is only a 6 minute half life. This means that should there be a malfunction or the drug is disconnected at any time, I have only 6 minutes until the opposite effect takes place (in this case the drug opens the arteries in my lungs, the opposite then is they shut down). Pretty scary.

Anyway, here are some pictures of my time in the hospital:

I asked Caleb & Andy to dress up in jewelry from the Pretty Pretty Princess Dress Up Board Game and they complied. Such gangsters ;)

 My small group came to me in the hospital. Caleb & I were question partners & cuddle buddies :P Here I was on a high-flow oxygen cannula, 40 liters per minute!

 Off the high-flow cannula, just showered and my hair washed. Those were the small victories in the hospital.

 This was Day 8 of 22. I tried keeping a positive attitude and was a favorite among the doctors and nurses!

Now I'm home. I have a central line for my intravenous drugs and I'm slowing upping my dosage daily. Side effects are no fun! Not allowed to return to work yet and getting kind of bored at home! Here is a pic from my first day home after the hospital:

You can see my central line there. Forever connected. And yes, I have been compared to Iron Man. No big deal.

I can see the resemblance...

So now that we have that all updated, I will leave it be for the night. I mean, any longer and people will stop reading. But I do have some fun stories from my time in the hospital that I will share with you all shortly!

J

Wheelchairs: Adult Strollers

A lot has happened since my last post:

Heart Update

Not a lot here, actually. Still waiting. I had another sleep study last night and had to sleep the whole night with a CPAP. Every time I move in my sleep I get short of breath. Usually I settle down fairly quickly. With the CPAP I just felt like I was suffocating - so that was fun.

Next week I have my appointment with the Congenital Heart Defect doctor and we'll see where we go from there!

Last week I took off work and spent the week with my awesome cousin, Jaclyn! She finally made her way to Michigan and we had so much fun!!

First we started in Chicago. We went to a yummy Peruvian restaurant, Navy Pier, Water Tower Place, Museum of Science and Industry, Shedd Aquarium, Greektown, Little Italy, China Town, Millennium Park, Giordano's for Chicago-style pizza and the highlight of the trip, to see Book of Mormon!

I loved Book of Mormon, but I wouldn't recommend it to almost anyone I know. If you pretty much don't get offended and like a good laugh, see it. If you get offended at all, just don't. haha.

Here are some pics (Jaclyn has all the good ones, but here's some stuff):

 

The Bean

 

Millennium Park waiting for our bus

 Submarine in the Museum of Science & Industry

 

 Jaclyn testing out the wheelchair while I was in the bathroom

Nothing like the love between a man & his fish - Shedd Aquarium

Then we came back to Michigan so she could see where I live, see the family that lives here and experience Michigan! We did a full on tour of Grand Rapids (and surrounding areas), went to Lake Michigan, wandered downtown Holland, went to Dutch Village and visited the campus of Michigan State University - where they have a vet school that Jaclyn is going to apply to (as a back up, she wants to stay in California if possible).

Here are a couple of pics, but again, Jaclyn has most of them:

Jaclyn experiencing Lake Michigan

Cousin Wine Tasting - Jaclyn, Me, Roseli in Holland

So a lot of good times. I learned something, too - a serious heart condition does have its benefits.

Now, don't get me wrong, we had to pay extra for accommodation/taxis, there was a lot of extra work and struggle, it's not all sunshine and rainbows.

But here are some benefits:

-Special (shorter) lines
-Use of facilities that others may not get (elevators, for example)
-People always remember you and if they're nice, that's cool

And the biggest benefit: Wheelchairs!

Ok, so not so much a benefit for Jaclyn, but for me it was AWESOME!

Not only did I get to experience the museum and aquarium without being out of breath/exhausted all day, but when I got too old for a child's stroller, I would always look at kids in strollers and admittedly get jealous. I'm all "I want a stroller for adults." 

You guys: Wheelchairs are strollers for adults! And even better, when you go down a ramp, it's sort of like a little roller coaster. I'm not even joking, I would put my hands up and go "Wheeeeeee!" down the ramps.

 I felt like these monks on a roller coaster

I also had an amazing birthday on Tuesday. Lots of love on facebook and via text. My awesome co-workers decorated my desk and provided both breakfast and lunch. Then for dinner my friend threw a surprise party and we had Indian food and game night! They also donated to help me with some of my added expenses, it was so nice to see all the people who care. And it was so much fun!

 Co-workers decorated my desk - look at the mini cowboy hat!!

 My team (minus Anne) in our mini cowboy hats (and the red mustache for me)

 Surprise party at Bombay Cuisine - my awesome friends (missing Andy, Amber & Kyle)

 My friends made sure I remembered my gender for my bday. In case you forgot - It's a Girl!

Alicia is also being a creeper in the background.

Feeling blessed and also looking forward to more adult strollers.... 

J