Not bad news. Not great news. Just moving to the next step.

Fwiends.
I have so much to tell you all.
I mean, it's only been like a week since my last post, but a lot can happen in a week.

Well, my health has gotten really bad again. my body has gone into complete rejection mode and its awful and painful. It's been really rough.

My doctor appointment to talk about all the tests I went through was originally scheduled on February 14, but earlier this month they called and asked to move it up. So yesterday, January 28, my mom and I headed up to Sioux Falls once more to get me some answers.

Now friends, the anxiety that filled us was unsettling.
We were preparing ourselves to hear one of two things; the first being that they couldn't see anything and that they wouldn't know what to do for me. Second being that there was something actually seriously wrong, but that there was a name to it and that there was a treatment.

In my mind, I had prepared myself for things as bad as cancer. Because at this point, it would at least be SOMETHING- some sort of explanation, right? I had decided I would rather it be something bad, with a name, with a treatment, than to have them tell me they were clueless. But either way, whatever the outcome, I just wanted to be able to better His kingdom.

Like I said before, we were prepared for both answers, but we didn't get either of them.

That's right. neither of them.

So what did I find out?

Well, my EEG showed signs of NO seizures! WOOT WOOT! That way I get to keep my license. PRAISE THE LORD!!
But it did show that I, obviously, have POTS. No big surprise there. I was also diagnosed with severe insomnia. Again, no big surprise.

Second, since I don't react well to almost all medication, we're trying something new.

I am starting regular infusions. What this means is that they're giving me a big ol' cocktail (mix of lots of drugs) and giving it to me through a 4 hour long IV.
I got my first big infusion today.
It was interesting, to say the least. I don't feel a ton of relief from it yet, but my nurse told me that it usually takes a little bit to take full effect.

THIRD OF ALL, I'm getting a spinal tap.
*insert cringe here*

I, being the incredibly intelligent person that I am, decided to YouTube exactly what a spinal tap was a while back.
Worst. Decision. Ever.
I really don't have an issue with needles at all but it really was probably not one of my best ideas to watch that.
Anyhoo, I will be undergoing that in the near future, also.
They want to see how much pressure is around my brain, and in the process, hopefully release some of that pressure through the spinal tap.

My doctor also has decided that if my infusions still aren't ridding me of the severe migraine I've had for at least 5 years straight, the next step would be to do injections into the base of my skull. Sounds like fun, huh?

So.. yeah!

Not bad news.
Not great news.
Just moving to the next step.

Still praising the Lord for His provision and gift of friends to love on me and pray with me through this all.

In other news, my family, along with myself, just came down with a really nasty cold. Ick.
ALSO, we close on out new house this upcoming Friday. WOOT WOOT. Yay for new beginnings.

Again, lots of prayers needed for the upcoming months with my health and my family's transitions into new seasons of life.


xoxo,
g.p.

finding joy in the chaos

Well friends, since coming home from the hospital, life has been anything but average, as usual.

My days have been filled long days at work, tough health declines, meetings, snow, decision making, and lots & lots of packing.

That's right; what you've heard is true. We're moving! Due to personal family matters, we are packing up and moving to Sioux Center. We are very excited to embark on this new season in our lives. But along with much excitement, there is also a lot of stress, anxiety, and just all-around not knowing where to start.

Really, though.
Moving just downright SUCKS.

But what does this mean for the future?

As you may know, I was planning on moving down to Kansas City this summer and the attending IHOPU- International House Of Prayer University, in the fall.. But sadly that has been on hold for 3 or 4 years.

With all of the chaos going on in my family, I feel that I need to stay where I am for a few years just to give my family a little bit of stability. Although I find it sad, I find joy in the fact that I will get to spend time with my little brother as he goes through high school.

In the mean time, I am going to continue at my job (which I love), adjust to my new community (which I also love), do an internship through ATLAS of Sioux Center, lead worship here & there, and praise my Lord and Savior in all that I do.

Amidst all of the sadness and chaos the past few months and the next few months hold, I find such joy in the thought of new beginnings.

Thanks to all of our friends for supporting and loving on us through this all.

xoxo,
g.p

Day 3: SURPRISE!! 1.9.14

Today has been a great day!

This morning, all I wanted to do was to shower.
A simple shower.

But my nurse kept telling me that I had to wait.
I didn't want to wait.

But I waited. Bleh.

My mom had to go to a meeting this morning, so my grandma Tracy came up. she brought my favorite snack, rhubarb fluff. It was yummy.

At around 12 noon, my Gracie-Lou came over so grandma could go home.

At this point, I still haven't showered.
It. Was. Nasty.

Finally 2:00 rolled around. I was beyond bannout by this point, so I called my nurse in and told them they HAD to get me in that shower ASAP. As soon as the nurse walked out, my EEG tech walked in and told me I was being discharged early. WOOT WOOT.
The best part? I got to shower. It was heavenly.

The reason they let me go early was because I had enough episodes and my doctor saw enough stuff that she didn't want us to pay for a whole 'nother day in the hospital if it wasn't necessary.

So, yay Dr. Jaisani, savin' us money and stuff.

My next appointment is February 14. That's when we'll hear results.
Until then, I think my stomach might permanently be in knots until then.

It's been a long, exhausting week.

I am currently sitting in my own bed, cuddling with my kitties, and chattin' with my brother.

All I can say, is that it's good to be home.

xoxo,
g.p.

Day 2~ 1.8.14!

Well, friends, day 2 is coming to an end.
Wow. Wow wow wow.

Saying that today has been rough would be an understatement.

To show my doctor what happens to me when I pass out, do too much activity, etc., I was forced into having an episode.
By episode, I mean episodes.
And by episodes, I mean they forced me pass out.
3 times.
I repeat: THREE TIMES.

To be honest, it sucked. It sucked real bad.

But once again, I have seen blessings upon blessings.
Many visitors.
Many heartfelt gifts.
Many prayers.
Much love.

Here's a few pictures to recap the day~

After my ridiculously early wake up call, I got to lie in my hospital bed and watch the sun rise. Being on the 6th level, I have a really nice view. Although I was tired, crabby, and hungry, it was humbling to simply be still and sit in awe of the Lord's beauty. 

My sweet, sweet friend, Hope, whom I have not seen in a little over 5 months, surprised me with a triple shot Americano from Starbucks, her beautiful self, and a gorgeous antique spoon. (pictured below) 

So, so thankful for her thoughtfulness.

 (if you read a few blog posts back, you will see how special spoons are to me.)

Not pictured- my old friend Isak stopped by to say hi, also!

 These two ladies are quite sneaky. Lexi, whom I have adopted as my little sister, had gotten ahold of me and told me they couldn't make it, etc., etc. When SUDDENLY Lexi, and her amazing monther, Nancy, came truckin' thorugh my hospital door. I got so excited I almost passed out. I recieved a late Christmas gift plus a stuffed animal of a cow. 

Cows are my favorite animal, FYI.

Anyhoooo, so thankful for these two. They're the best.

Phew. I am really quite glad that this day is finally coming to an end. It's been long, tiring, and painful.
Praying for a better day tomorrow.

xoxo,
g.p.

Day 1! 12.7.14

Well friends, today was the first day.
It's been a rough day. Hoofta.

I didn't do much today because my pain levels are quite high.. but the one thing they did do, was quite awful. Because my body doesn''t react well to heat & because I can't sweat, they decided to crank the rooms temperature up, put 2 heated blankets on me, plus 3 normal ones, and just wait to see what happens.

it. was. awful.

but the plus side: I had lots of visitors that cheered me up.

Here's some pictures to recap the day~

we started with getting me wrapped up all pretty.

and then Mom had to go to a Christmas party, so my best friend, Grace, is spending the night with me!

my friend Kayla came over from college to say hi! also, that nasty heat test was going on during these photos.

AND THEN, these lovely ladies came to see  me. they're my absolute favorite. they brought me a balloon, stuffed animal, card AND chocolate. they. are. awesome.

we had a whole lot of fun. they made me forget how high my pain levels were for a while.

a few more random shots from their visit~

Overall, it's been a rough day; but things could have been much worse. I'm am so thankful for the love, support, and many prayers I have receiving already. I appreciate it. Thanks, friends.

xoxo,

g.p. 

over packing, hospitals, & spoons

As I continue to pack for my newest hospital adventure starting tomorrow, I, once again, find myself forgetting that I will only be there for 4 days.. not 4 weeks.
Typical girl.. over packing.
But hey, better be safe than sorry, right?

Well, as I mentioned, my newest hospital adventure starts tomorrow. I am quite nervous but part of me is quite excited to have a doctor thats finally working to get to the bottom of this all.

In the next few days I will be posting on this adventure so stay tuned.

In the mean time, I want to take the time to explain something to everyone. As you may recall, sometimes I refer to myself as a 'spoonie'. What does that mean you may ask? I'll explain.

The term 'Spoonie' comes from something called "The Spoon Theory" written by Christine Miserandino. It's quite the long read, but it's so, so worth it.
Here it is:

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino
- See more at: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/#sthash.2mXBpiJs.dpuf


xoxo,
g.p.