Romans 8:28. Just use this for something, Lord.

It's been an overwhelming few days.

Sunday, I had a seizure at church. My first seizure in 49 days.

I went to the ER because my neck hurt really bad and I couldn't get up without crying.

A CT scan revealed that my neck was fine from the seizure...but that there is a lesion in my throat right near where my thyroid used to be (yeah, thankfully it hasn't decided to grow back again). The CT machine doesn't have the capabilities of telling what the lesion is in terms of a tumor or cyst or something else, but the doctor said that with my history of tumors in that area, the odds weren't exactly stacked in my favor. He told me to get to my endocrinologist ASAP.

By some miracle, my doc had an appointment open yesterday morning. Usually, because she's only there a couple days a week, it's pretty much impossible to get a same-day appointment. I brought her the report, and the radiologist had actually written in there that he was recommending an MRI with contrast to find out what it is. So she got that scheduled immediately, and last night at 8:30 was basically the only time they had open all week. So I went. Then, I spent 4 hours in the ER to get my shunt reprogrammed because I couldn't just go to my neurosurgeon's office because of the hour. By 11:15, I was in excruciating pain (it started hurting worse about 3 minutes after the MRI started), so the wonderful doctor went and ordered me Morphine without making me try lesser drugs that were not going to work. Bless him.

Well, I wasn't expecting to get results on the MRI until next week when I went back for a follow-up with my doc, but her nurse called me today because the report had just gotten faxed to her. The MRI still couldn't tell us what is in my throat, so she said my options were just a regular ultrasound or an ultrasound-guided biopsy. I was like, uhhh biopsy, I want to know what the hell this thing is and what we need to do about it. So...I have a biopsy next Wednesday.

My nerves and anxiety have not really been handling this well the past couple of days. I'm really scared. How I found out about this lesion is literally the exact same scenario as how I found out I had tumors last time. And yeah, the chance of cancer is really low, especially because my tumors have always been benign, but it's just, this is the fourth time I've been faced with this. And I'm scared this is going to be another tumor and I'll have to deal with another surgery. I'm just overwhelmed because I so was not expecting to have to deal with any of this. And plus now, like, I've never had a biopsy before (believe it or not) so that is not really doing anything for my anxiety.

But here's the thing. I have been practically flooded with support since this started on Sunday. From everyone at church, to Summer who I was texting throughout that afternoon, to Clayton and Austin, to all of my soccer boys, I am acutely aware of just how incredible the people who love me really are. They tell me I'm Superwoman when I feel like I'm falling apart. They believe I'm going to be just fine when I'm struggling and scared. There hasn't been one second since I got this news on Sunday that I have thought I was alone in this. I am incredibly thankful that I have this security in the midst of a lot of uncertainty.

Last night, I had a dream about the day I met The Vespers. I specifically remembered how Bruno told me, "You're going to do big things with that testimony, bigger things than I'll ever do." And despite my fears, that's really helped keep my perspective in check. I can't control what's happening - it's happening whether I like it or not - but what I can do is pray that God will use whatever comes out of this to add to the story I've been given to tell people. Romans 8:28 says that God works all things together for the good of those who love Him. He's done that with stuff from my past that is a lot worse than this, so I believe He can use this, too, and make good come from it. I see that already in the fact that while it sucks that I had a seizure after seven weeks free of them, if I hadn't had that seizure, I wouldn't have found out about this lesion. So this what I'm praying for, because I feel like that's all I've got. I want His plan, not mine.

So yeah, I'm scared of what's going to happen, but in the end, I know that I'm not going to have to face it alone. And that's enough reason alone to say praise God.

Before I had the seizure, this is one of the songs we sang at church.

Every blessing You pour out
I'll turn back to praise.
When the darkness closes in, Lord,
still I will say
Blessed be the name of the Lord.

I don't know about you, but I quit believing in coincidences a long time ago.

Progress. Finally.

So I had two more seizures on Sunday. God bless my friend Christian, that's all I can say. He's starting to feel like my guardian angel.

After that, they decided to admit me and kept me hooked up to a video EEG again because 7 seizures in 8 days is just not okay.

We finally FINALLY got some answers. It turns out I have a mix of epileptic and non-epileptic seizures. The epileptic seizure happened in my sleep, which is crazy because that's the first time I've heard of that happening.

So it's back to therapy for the non-epileptic seizures, and it's gonna take more trial and error to figure out what to do for the epileptic seizures, but at least with it marked on video and EEG, Friedman has something to go on.

I'm so happy there's finally progress. And also, I have a doctor who was determined to treat me no matter what kind of seizures they were. Which is vastly improved over the treatment I was getting in NC.

Sunday night to Thursday morning, that's where I was. I got out and spent basically all of Thursday sleeping. Hopefully things will get better from here. Friday will be a bunch of errands and phone calls.

So. There's this.

So let's recap some things I didn't talk about in yesterday's post because it was Mother's Day.

I've been seriously contemplating quitting my job. Mostly due to the seizures I've had and the fact that it's hard on my body and it's so hot there with the AC broken and no clue when it will be fixed (see: seizure flare-up). But also because I need to do something that doesn't kill so many brain cells.

Yesterday: Up till 7 am unable to sleep for unknown reasons.

Missed church.

Slept.

Went to work.

Talked to the shift lead (she's super sweet) right after my dinner break. Told her I would do my best to make it through the shifts that are already on the confirmed schedule, but I was feeling like this was really what I needed to do.

30 minutes later: seizure.

Paramedics came.

Told them I didn't think I needed to go to the ER.

Had another seizure, falling on the paramedic.

Told the manager I couldn't come back. Period.

Usual ER trip, with the addition of learning the DEA has a file on me with red flags. AWESOME. -_- (Hey, DEA. I have a long medical history with a lot of problems. I'm not a drug addict. But thanks for the concern.)

Home. Unable to sleep.

Today: Migraine.

Turned in EU paper.

Turned in official letter of resignation to work.

Lots of sleep.

I planned to start work on the last paper, but meh. I still have time and it just was not going to happen today. Oh well.

Five good things of today.

Duke won the national championship. Happy for my grandma.

I got to come home. I love my recliner.

I took Mom to meet a bunch of my DWM fam. That made me SO happy.

There was gelato. Delicious, delicious gelato.

Clayton asked me to FaceTime. Usually I initiate so that made me happy, plus it's always sweet to get to talk to him.

One bad: I have to go to work tomorrow. Ew.

Did you know that there's a show called Alaskan Bush People?

Because there is.

It's on Discovery.

It's about a couple raising their seven kids, six of whom are adults, out in the wild.

And it's just about the dumbest, strangest thing I've ever seen on television.

Mom turned me onto it when she got here today because we were looking for something on TV, and she said her boyfriend introduced her to it. He watches it for the survival stuff, she watches it because it's hilarious.

And then we spent the next six hours watching a marathon of it and laughing hysterically.

Mom and I always find things to laugh about when we're together. I just never expected it to be this. I'm utterly fascinated.

In other news, Ashley and Didrik brought me an Easter basket for some cheering up, I really can't wait to leave tomorrow, and I am so, so happy my mom is here?

Highlights From Today

Thank God for iTunes and the Final Four games. Because seriously, without the first five seasons of Glee on my computer and almost five and a half hours of basketball, I'm not sure how I would've managed to avoid sleeping the whole day away. Now I only have three hours before I'm allowed to go back to sleep.

I'm. so. bored. On the upside, I learned that this floor is all "elective-admission" patients, so I really am allowed to leave when I want to. Which means that Monday morning, I will be saying peace out to this place.

A crazy little thing happened this afternoon: Pastor Ben texted and, long story short, in the middle of Easter service tomorrow, he'll be calling me and putting me on speaker and a mic so that I can share a bit of my testimony and how God has pulled me through everything. I definitely wasn't expecting that, so I'm very anxiously excited and honored that he would ask me to do this, especially during such an important service.

The highlight of my day (I know, the bar is pretty low in a hospital) was getting to talk to Austin for 30 minutes this evening. I just randomly started thinking about him and decided to call, and for once, I actually called him at a really good time. I'm just so thankful for the bond that we have and the way that we can trust each other with things, especially things we're not ready to tell many other people quite yet. And it meant so much to get to pray over him and everything that he's got coming. I really miss him, and it makes me smile when I hear him tell me he loves me, because I really, really in every part of me know he means it.

Tomorrow, Ashley is bringing me a "sorry you're in the hospital" Easter basket after church, and best of all, I GET TO SEE MY MAMA!!!!

Though I have to admit, I'm also really looking forward to the chocolate.

I don't want to be here.

This testing is stupid.

Their chances of making me have a seizure just by sleep depriving me are slim. As far as I know, they aren't doing anything but that and taking me off my medication, but I wouldn't know because nobody's freaking talked to me today.

I never wanted to do this in the first place, but my doctor basically strong armed me into it.

I don't know what they're going to get out of this that they don't already have.

Hospitals make me feel so sullen and depressed and send my anxiety through the roof.

The only good thing is that Mom will be here the day after tomorrow, and I have the right to tell them I want to leave which will be Monday morning if they don't send me home Sunday. You can only force someone to stay awake 20 hours a day for so long.

3 am needs to hurry up so I can sleep and forget how much I don't want to be here doing this.

That time I wanted to throat-punch an old lady.

For the first time in my life, I was in a 4-bed hospital room.

That was about as much fun as you would imagine.

Especially since I was sharing with 3 very old women, none of whom spoke very much English, who kept me up all. night. long.

The Chinese woman was hacking.

The Spanish woman either had her entire biological family in the room or was snoring like a buzzsaw.

And the Russian woman was moaning and whining for help and that she was dying no matter how many times or how frequently our nurse came in to see her. As soon as he left, she started up again. By about 3:30 am I was so tired and in so much pain that I wanted to get up and go off on her. I didn't, though. Because headphones.

Needless to say, this made an already crappy day worse.

And again.

Tonight after work, I ended up in the ER again because of severe chest pain, blurry vision, dizziness, and headache and nausea that didn't respond to medication.

So it was a long sleepless night, thankful that Holly was there with me for most of it until she went home to sleep.

They decided to admit me in order to rule out any dangerous or scary things. I was too tired and in too much pain to say anything but okay. And then I prayed I wouldn't be in a super long time. Because hospitals make me scared no matter how many times I'm in one.

Well, this day was ruined.

Last night, not long before I got discharged, the doctor that was treating me decided to give me some Dilaudid to help me sleep through the pain because he said it looked like I hadn't slept in days (which wasn't entirely true, I just hadn't slept much each night).

Well, one mg of Dilaudid led me to sleep all day today. Like, until 8 pm all day.

I had lots of plans for things I needed to do today, but those plans were rather shot.

Oh well. I have Monday. And most of Wednesday. It'll get done. Apparently I really needed the rest.

I'd rather have been killing myself at work.

I semi-collapsed at work today.

Bending my neck down to look at my drawer as I was counting change somehow screwed up my neck, which sent explosive feeling pain into my head and neck and immediately made me feel like I was going to have a seizure. That was awful and embarrassing.

I'm fine, but I spent a very long night at yet another NYC hospital today. It took forever to make any real progress because the place was a madhouse, but the good news is that once I did see someone, the doctors I saw were very kind and thorough and listened to me.

Needless to say, this was not my favorite day. I'm thankful that I was taken care of, and that if this was going to happen at work, a) I didn't actually have a seizure and b) the manager that was on is very sweet. Hopefully when he told the higher-up manager that came on after him, it won't cause any problems for me. I guess I'll find out Sunday when I go back for my next shift.

Still Here

Well, still in the hospital.

The doc just didn't feel comfortable sending me home yet with how my lungs still are.

I'm okay with it. I'd rather get back to (my version of) 100% by staying here longer instead of going home early and then end up back here in a few days.

I'm getting there. Hopefully tomorrow.

Bad News then Good News

I'm in the hospital for IV steroids. Should be out tomorrow.

Good news is I have Wifi. House of Cards binging is underway.

And oh yeah, I have funding for NYU for the spring semester. God is good.

Post #2000. Wow.

Your medical lesson for the day, kids.

Heads? They can bleed a LOT. Even when the cut is very shallow and small. Ask me how I know.

Oh who am I kidding. You know I'm going to tell you. Consider this the latest chapter in the saga of "Stupid things Mal does to injure herself."

I went to the bathroom before class this morning. The stalls in this bathroom are pretty small, but I've gotten used to them. My phone fell out of my pocket when I pulled my pants up, so I bent over to pick it up. And when I came back up, I guess I totally misjudged just how small the stall is, because WHACK! I came up and slammed my head straight into the metal lock with some pretty decent momentum. I stood up completely and just rested on the wall of the stall for a second, because at first, I thought I had just knocked it so hard that it made me a little dizzy. And then I felt something running down my cheek. I reached my hand up to wipe it, hoping it was sweat, because I was warm, but nope, it was bright red.

I got out of the stall and rushed to rip a paper towel out of the machine. Getting more lightheaded by the second, I stumbled out into the hall which is thankfully next to a common area where a few students were working and said, "I'm bleeding. Can you help me?" I sort of collapsed against the wall, and they rushed over. I never lost consciousness, thank the Lord, but I sure felt like I was going to. One guy got me a crap load of more paper towels, one girl got the stuff from my room, and this guy named Mike squatted right in front of me to keep me focused and help me slow my breathing down, because I was kind of freaked. Especially considering I bled through at least 8-10 paper towels by the time the EMTs got there.

But when they did get there, it had pretty much stopped bleeding. I was told I was "awesome" for knowing to put pressure on it. I thought that was just common sense, to put pressure on something that's bleeding to make it stop, but you know, okay, cool, thanks.

I didn't find out until I got to the hospital that it's actually a rather superficial, small laceration. Go figure. My scalp is bruised around the cut, which is not surprising in the least, but other than those two things, I'm fine. I just have to deal with a splitting headache for a while.

Also another lesson? I may never describe a migraine as "stabbing" ever again, because I never truly understood what stabbing felt like until this.

Oh boy. My life is just one big bucket of entertainment, isn't it?

This is titled Friday because I can't think of anything else.

So yeah.

NYU's hospital? Horrendously slow, even by hospital standards.

And the food was so awful and inedible I couldn't even finish it. Which says a lot, because I have plenty of practice at eating nasty hospital food.

And since I learned last night at my friend's apartment that Verizon sold me a defective charger, and Holly was at home sleeping for about 13 of the 19 or so hours I was at the hospital, I had to be very very careful with my phone battery. So it was a long and boring day.

But anyway, the good news that I mentioned yesterday. For once, I didn't have to listen to doctors tell me that they can't find anything wrong with me and thus have no idea why I'm still having seizures. There were two abnormal spots on my EEG that I had done this morning, which should explain things. The doctor I saw on Wednesday recommended I be transferred to another NYU doctor who is more specialized in epilepsy issues. And somebody finally adjusted my meds. So yay progress.

I didn't get out of the hospital until after 5:00 today, so I didn't have the chance to make an appointment with this new doctor, but I'll call on Monday and get it done.

Other than that, I came home and rested and caught up on TV. I have a lot of reading to do, but I just didn't have the energy for it. Holly took very good care of me and got my meds from the pharmacy and went to two different Verizon stores trying to replace my phone charger and still didn't, I told her she should've just gone back to the one where I bought it because it wasn't that far, and was just overall very sweet and very attentive.

But I am absolutely beat now. It's very difficult to get good sleep in a hospital, as anyone who's ever been in a hospital knows.

Good night.

This day was a long one.

And the sad part is, I didn't leave the house until almost 1:00.

But after class I spent two hours at the health center trying to get set up with therapy services.

And then I went to the Verizon store to buy a new cell phone charger because mine got stolen after it got left behind in the classroom where I had a seizure on Monday.

And then I went to a church friend's apartment for a meeting, except the cab driver had no idea how to get there so it took way longer than it should have.

And then I spent two hours pretty much at that meeting.

And then, we were walking back to the main road so I could get a cab home, and I had a seizure with no warning.

Two seizures, actually, but I didn't wake up between them.

And I fell on asphalt.

Ow.

So then I ended up getting stuck at NYU's hospital overnight.

That was fun.

Good news would come, though...well, at least I'm calling it good news...

Nothing

As in, all that stuff I wrote about yesterday possibly being wrong turned out to be nothing.  I spent all day at the hospital today because the really really sharp pain in my shunt area came back last night, and they managed to get some old scans sent up from Duke late this afternoon, and it turns out my shunt and ventricles have been like this for years, so it's just how the shunt is set up in my brain.  Nothing to be concerned about.  Praise Jesus.  I can continue on with getting ready for all the grad school stuff without worrying.

Glad that's over with.  This has not been a fun couple of days.  Now if only I can find a way to get my head pain back down to a manageable level since the doctors at the hospital wouldn't do anything to help.

For now, though, I'm going back to sleep.

Growing in Trust

Well, it was a good thing I blogged before I left the apartment last night.  Things...uh...didn't exactly turn out quite like I planned.  It started out great, we went to a bar and hung out, and I was dancing and felt great.  Then I got overheated.  And I sat down and started getting a sharp pain in my head pretty much right on my shunt. Then I got really nauseous and felt a seizure coming on.  Luckily I managed to get on the ground before it happened, but you can imagine just how well that whole scene worked out in a bar crowded with people.

The EMT people that showed up were very nice and all.  I decided to go to the ER to figure out why my shunt was in so much pain, because the only other times I'd been in even close to that much pain, I'd hit my head and last night I didn't hit anything.  The hospital was when things got even more complicated.

It appears as though the tip of my shunt has moved, and because of that, one ventricle is not draining.  They called it obstructive hydrocephalus.  However, they couldn't or wouldn't do anything last night because they want to get my neurosurgery file from Duke and some of the images I got done at the hospitals near Campbell so they can be sure by looking at what my shunt and ventricles looked like when doctors said my shunt was normal and everything was working properly.  So both the doctor and I are calling Duke and Central Harnett in the morning to see how quickly they can get that information up here and I am calling to make an appointment with the doctor that was in charge last night at the end of the week in her office.  Hopefully everything will be up here by then and we can make a plan as to what to do next.

Now, I'll be honest.  Before the "we need to get old scans and then see what to do" plan was given, my mind went to some dark places upon learning that my shunt seems to have moved.  I immediately remembered the 2009 brain surgeries and the hell-on-earth feeling of those few months, and panicked a bit at the comparison of how that was the week before I was supposed to start Campbell, and this is pretty much the week before I'm supposed to start NYU.  I thought about how Mom has just started the workdays for her new job, and knew she can't afford to take time off already for me to have another surgery, especially not when she'd have to get a plane ticket to come be with me, and how even if I told her not to come she would anyway because that's what she does.

But part of me thought - 'If surgery is what needs to be done to fix this, fix it.'  I don't want to put it off and then be on the brink of another life or death situation.  I'm not exactly thrilled with this plan because this means I have to wait several days before knowing what's going to happen next, if yet another surgery is knocking on my door.  Waiting sucks.  But it's also the best way for me to grow in my trust in God.

Pastor Chris said God must really trust me, because He's given me a hard mission.  I don't know why God trusts me, because I certainly don't feel qualified.

But I know why I trust Him and that's what matters.

Rough day, to say the least.

Was up pretty much all night last night from pain again.

Slept about 4:15-6:35 when Chelsea showed up with Blake.  Mom and I were watching him today because she had to work (she usually only works Monday-Friday, but they asked her to come in for this shift).

Blake was...Blake.  My favorite person in the whole wide world, but absolutely exhausting.

Finally fell asleep again about 1 pm.  Thankfully, Blake took a long nap about this time, too, so Mom didn't even know I was sleeping because she didn't need me.  Slept until 4:30 when Chelsea arrived to pick him back up.

Fell back asleep once they left and the screaming subsided until about 6:30.

Got up, watched the rest of the USA vs Nigeria soccer game, ate pizza.

After the game, went for a walk.  This is where things got kind of scary.  I was towards the end of my first lap and suddenly I collapsed.  I didn't pass out, but my body gave out on me as if I had.  I was overcome with the worst chest pain I've had since that staph pneumonia in November 2009.  I hadn't been wheezing, but my chest was so tight I couldn't get air in very far.  I always bring my inhaler with me on walks, so I tried to use it but it didn't do a thing.  I laid there on the side of the road about 10 minutes, first waiting to see if it would subside (instead it only got worse), then trying to flag help down but the few cars that drove by didn't see me because the sun had just set about 20 minutes before so it was pretty dark, and for the first time that I've taken a walk, no one else walked by.  Finally, about 8:40, Mom called me back because I had called to ask her a question before I left, and when I told her what was up, she rushed back from Jim's house.

I was seriously afraid something was wrong (and it takes a lot to scare me medically) so a few minutes later I called 911...still on the side of the road.  Mom and her boyfriend showed up just as the ambulance got to me.  They did usual EMS tests and once the EKG came back normal and they figured it wasn't my heart, after learning about my history, they thought it was pneumonia and everyone but Mom agreed I should go get checked out.

I got to the ER about 9:30, and spent the next six hours getting a plethora of tests and bloodwork done.  Ruled out heart problems via the cardiac markers in the bloodwork.  Chest X-ray.  Chest CT with contrast (contrast is awful).  And a whole load of nebulizers.  They refused to give me pain meds, too, which was awful because as miserable as I was, with my extremely high pain tolerance after 20 surgeries, it was bad.

Long story short:  I spent 6 hours at the ER for them to tell me that this is my pleurisy, just instead of my usual pleurisy affecting the lining of my lung tissue and shooting pain down my right ribs and up to my arms, it's just severely severely inflamed my entire chest wall.  So Mom was pretty pissed that we went there "for nothing" since she wanted to just put me in bed and go see my family doctor on Monday, but with our luck and my medical history, if we hadn't gone, Monday something would be horribly wrong (they did the CT with contrast because they were very concerned I might have a blood clot in my lungs) and she wouldn't let herself have her surgery on Tuesday.  And at least we know what this is and why I've been wanting to do nothing but lay in bed and sleep as much as my body will allow the past few days.

So yeah, they gave me some anti-inflammatory meds, and just said keep taking nebulizer treatments, rest a lot, and don't do any strenuous activity until this eases up so as to not aggravate the inflammation and make it worse than it already is.  That means I won't be able to go walking for a while.

This is what I get for exercising. ;) (Kidding!)

But yeah, this is what I managed to get done tonight before all hell broke loose.

Now if you'll excuse me, it's past 4:30 am and I am beat.  I'm going to go try to rest...if the massive amounts of albuterol coursing through my system will let me.

Nice Hospital Staff

So...today was my first day back to school in six days.  I was excited, and actually felt pretty good!

And then I blacked out with no warning at all in the middle of my first class.

They changed my seizure meds again yesterday because of the seizure I had on Sunday, but it's back to the one medicine and dosage that I was on for years seizure-free, so chances are high that my body just needs a few days to get used to being back to the one med and on the higher dosage.  I'm really hoping that this works, because I'm really tired of this mess.  Especially with Thanksgiving and finals and then Austin coming up.  I need to be well!)

The only reason I went to the hospital is because I fell.  At this point, I'm well aware that the hospitals can't do anything for the seizures, but my neurologist said that falling is one of the few reasons that I should go to the hospital.  I had to get a whole slew of X-rays, which made the body pain even worse, but as soon as those all came back okay, the doc released me and Hannah was there to pick me up.

But today, I'm thankful for the nice people that took care of me at Central.  No one treated me like I was crazy, or a drug addict.  People were nice and attentive.  The doctor listened to me.  The nurse was patient and caring and made me laugh.  The X-ray techs were super friendly and felt so bad they were causing me added pain (wasn't their fault!).  After all the time I've spent in hospitals, not only do I know how difficult their jobs are, but I've had everything from absolutely spectacular to terrible and frustrating care, so I appreciate the good ones that much more.

Here's just hoping I won't have to see the ones around Campbell again anytime soon.