health
Today I woke up exhausted, not liking the gloom out my window, not looking forward to eliminating my Ex's existence on my legal documents, and not looking forward to visiting my hepatologist - an hour away - late in the afternoon.
So first up... in to see my attorney to get all of my power of attorneys, durable healthcare power of attorneys, living will, etc. revised. Mr. Attorney said it wasn't smart to put my fiance in such important legal documents, but I told him we weren't like other couples, and it would be fine. Today I bit my words as we took his names off of all of my legal documents - as if he doesn't exist - on my most important papers anymore. I signed, signed, and signed, and he notarized, notarized, notarized. Off we went with new documents, reflecting my new life. Off we went to Cleveland... ugh.
My mom and I listened to a really uplifting CD on the way there, and I love spending time with my mom. But the drive is so long. The visits aren't the worst of it; it's just draining by the time you do the driving, parking, waiting, signing in, etc. But onto to the visit - Of course I saw Dr. Hupertz's resident first, and this resident rubbed me the wrong way. That's what started it. Then I saw my doctor. All in all = lots of tests and procedures to be scheduled. My I'm-fine-hey-no-liver-problems-here break is officially over. It seems I get a hiatus every Aug/September through April or May since she tries to follow the school schedule, but it's approaching March... April... May... June, and there's lots of info she wants on me... well, here it comes again. How's the scans looking? How are the cysts on my kidneys looking? How big are the varices? Is the bloodflow blocked even more? Is the MELD high enough to warrant a transplant yet? She has questions, and I don't want to give her the time to get the answers. I don't want the answers in all actuality. I'm bored with all of this. I just want to be better. So anyways, back to today - then we go to schedule all these procedures. I always see the same scheduler who I love, but hey look, they decided to hire a new one who knows absolutely nothing. I absolutely loathe arguing, and that's all we were doing, so I had to have my mom come in and talk to this woman because things were seriously getting that heated. She couldn't care one bit about any word I had to say, and it was her way or no way, and she was all WRONG. So we finally got me scheduled, I went downstairs and gave them their vials of blood, and then my mom and I went to the car in the rain, and I slept the entire way home.
I get home, go to bed, exhausted and hoping I can sleep. Of course not. So I take some meds. Then I'm not sure if it was he or I, but texting with the Ex began. Things got violent and some very hurtful things were said, some opportunities to simply show love were ignored, and I ended up on my dad's bed crying while he watched TV. I asked him if this was a normal way for a guy to handle something like this. That's how the conversation began. He turned off the TV and we talked and talked and talked, onto and past about 200 different topics, each about said guy and his actions and what has happened and where it hurts. Then Dad stands up... what is he doing? Getting something out of the bathroom... oh... a tissue. For me. Dad got me a tissue. So by the time said tissue is in my hand, I was bawling, so he just stood there, arms open wide, until I came into them and sobbed. He told me he was hurting so badly for me and he knows how I've been wronged, how the approach to this breakup was entirely poorly-mannered and months of damage had already occurred.... long story. But he told me how this has been so hard for him to see me go through this, and he loved me, and there was a greater plan. So I sobbed, and he cried, and I sobbed... into my daddy's strong arms. His arms meant he knew, he cared, he understood, and everything would be okay. Hurt and violated, yes, but he agreed with me in my gratitude for the grace of God intervening 3 weeks ago. It's amazing, it is.
Then I texted my sister to see a movie at 10 with me. I ached to see Dear John again... to see someone else hurting like me. But, Nik has to go to bed for early class. I text my cousin. I text my bestie. I remember that Jen, bless her heart, had just gotten out of work, and here she tells me me she'll be on her way just as soon as she stops home for clothes. She's almost missing a work deadline on her new RN job and is exhausted out of her mind, but she's driving an hour from work to her house to get stuff to come 45 minutes to my house to spend the night and pray with me and let me cry and cry and cry.... and then wake up and make sure I'm just a little better in the morning. Now that's a best friend.
We are blessed, dear friends, so so blessed.
I've never met anyone else with the same liver disease I have. Never. My doctor assures me there really are other patients with primary sclerosing cholangitis - afterall, she treats many of them - but most of the time, it seems I'm the only one in the world with this awful curse. PSC is commonly diagnosed in one's 40s, next commonly in late-teens, early-20s. It's so much easier to think of older people suffering from this, not the five year old I was when I was diagnosed, or the more common whole-life-ahead-of-me teenager.
Then Dad found an article in Thursday's (12/31/09) USA Today and saved it for me...
Clock's always ticking for Penn State senior
- Mike Lopresti Gannett
He was 17 when the diagnosis came. Primary sclerosing cholangitis, the rare liver disease that killed Walter Payton.
Now Tom Golarz is a Penn State senior, a walk-on who has worked his way into playing time, an economics major with graduation ahead. And then what? Many active years, he hopes. A liver transplant someday to save his life, he figures.
But before a future with no guarantees, one last college football game.
The bowl sprinkle becomes a deluge in coming days, and nearly all the players will be more famous than Golarz. None will be more appreciative of the moment.
"It's hard to sum up how it feels to come to the end," he said over the phone from Orlando, where Penn State will play LSU in the Capital One Bowl on Friday. "I think I'll have a better understanding of what it means to me five or 10 years down the road."
Golarz will be on the Nittany Lions' kickoff and punt-return teams, as usual. No walk-on at a national powerhouse has an easy road to the playing field, since about seven dozen scholarships are given out to more highly prized prospects.
So what about the defensive end who twice during his college career needed a tube put down his throat to clear his bile duct?
Who understands that the current definitive treatment for many with his condition is a liver transplant, and that Hall of Famer Payton outran NFL defenders for years but could never outrun this, losing the fight at age 45?
"I assume they found out about his disease later in his life," Golarz said of Payton. "Comparing it to my situation, I guess, gives me a little bit of hope that I've caught it so early and maybe have a chance that I can really stay on top of it."
But the clock ticks for this, just as it does at the stadium.
"A transplant," he said, "is probable at some point in my life."
He hopes a new treatment will pop up in time to help, hopes it never gets as far as a transplant.
A lot of hope in this Nittany Lion's life.
One college offered Golarz a football scholarship. Instead, he decided to walk on at Penn State with dreams of Big Ten Conference football, since he had two brothers play at Northwestern.
"What it came down to is, I don't know how this disease is going to go," he said. "So sometimes selfishly, I think I want to do the things that make me happy."
Right at the top would be playing football for Penn State. The 6 a.m. workouts during the offseason? No problem. More wind sprints? Done.
"In comparison with some of the other things I've had to do in my life," Golarz said, "that's not asking too much."
Some days, the wall he hits by nightfall is harder than granite.
But not trying to play was never an option.
"When I first got (the diagnosis), I struggled a lot with 'Why me?' " he said. "I'm 17. I'm not supposed to hear about life and death and be thinking about 30 yards down the road getting a liver transplant. That took a long time to get over.
"I'm now in the position where maybe using it to get awareness of this disease could help. Maybe that's why God dealt me this card, where I could help other people. I like to think of it that way."
LSU will be a dangerous opponent Friday for Joe Paterno. He has a special-teams player who knows of one worse.
We are all Penn State fans around here - It's Poppop's alma mater, and he is the truest, most loyal, diehard PSU fan you could ever imagine. And I guess I'm technically not a fan, but I definitely would be if I cared even the least bit about football. :)
I can't believe what this kid is doing, and the hope he has is amazing. I'm excited someone like this (and even someone like Walter Payton) can use his growing fame to raise awareness, perhaps fund research, catalyze the movement we need to find a treatment option that isn't the enormous risk of an invasive liver transplant. The nurse and patient in me wants to yell at him for playing (playing a contact sport? this contact sport?! are you kidding me?!) but I'm guessing he's been passionate about this sport for his whole life - Telling a 5 year old to avoid contact sports is different than telling someone who has lived and breathed football for 17 years that they need to immediately stop playing. Sure, the right impact could rupture his spleen, and combined with other factors, cause him to bleed out before they even got him into an ambulance, but I don't think his story is going to end that way.
He has too much hope, and his realization of the need for awareness is just too promising. I wonder if he'll go pro - if he'll take that risk - and what else he'll do down the road. But most of all, I hope he makes it. I hope we all make it.
There are no headlines
for everyday heroes
there is no tickertape
no standing ovation
sometimes it's all they can do
to set their feet on the floor
in the morning
they go through their days
the best they know how
no rainbow need arch
through the sky
to inspire them
they have a special courage
shining deep inside
they go through their days
the best they know how
Ted Hibbard
This came into my inbox today while I was at clinical.
Today, I could not wake up. My alarm went off, I took a shower, threw on my scrubs, ate a bowl of Cheerios in record time, and left for clinical. We were supposed to be on OB today and next Friday, but our instructor said since everyone has seen births, we had an option of not going to clinical next week and going to campus instead. It's December, and we're all dead. Guess which option we chose. So today was our last day in clinical for obstetrics. We're done. (Well, next Friday we have presentations, course evals, and an "educational" movie, but that doesn't count.)
I begged to go to OB Triage today simply because our instructor was confused and assigned other people to Labor & Delivery and I sure was not going to do Postpartum again. Plus, a lot of births were going on so I figured Triage would be a happening place (Any pregnant patient who comes to the hospital is sent up to OB Triage. They could have the flu, a broken bone, or be in labor - most of them know to come to OB Triage and the ones who go to the ER get sent up anyways.)
Not a single patient came in until probably about 11am. It was all insane from there. December 1st was a full moon, so don't ask why it all happened today, 3 days later, but it did.
We got a woman who had a stomach virus (and was vomiting so loudly that I almost wanted to do so myself) and we loaded her up with a cocktail of phenergan/benadryl/reglan. Then we had a woman who had a scheduled C-section (4th baby, 4th C-section!) who needed prepped. This was my favorite patient because I got to start her IV! Now, rumor has it that no one teaches us IV insertion in nursing school. Apparently it's the orientation responsibility of wherever we get a job. That always sounded stupid to me, and thankfully my instructor isn't into going by all of the program rules. (I love her for it though - she's smart about it, she just has a much more creative, free-spirited approach to nursing) Everyone knows though that one of the meds I'm on make my hands shake. As in a tremor kind of shake. I'm a steller phelebotomist (or I was in my nurse technician days) but sometimes it freaks patients and instructors out. So my instructor felt my hands to see if she wanted to "let" me try the IV. Not even kidding. Then she randomly puts her hand on my stomach and says, "Wow, your entire body tremors." Yeah, welcome to the misery. I told her I was comfortable doing it and thought I could, so after I told her what med I was on and she about attacked me to find out why the doctors make me take it (umm, because I'm allergic to every single aternative?) she finally agreed to let me attempt it. She asked me what I'd need to start an IV and draw some blood (I voted for the 22 gauge, but the RN said I had to do an 18 - scary!), we reviewed the exact steps the process entailed, and I beautifully gathered all of the supplies in a Chux and carried them into the patient's room. (Of course I know exactly what you need to start an IV - I've only had like 100 in my lifetime...)
Oh and let me just insert here that Jen (my bestie) taught me how to do an IV (at my kitchen table - just like the time she taught me how to draw blood!) but I completely blew her vein. She told me to try again, and I was too traumatized by creating a huge blood bruise to accept the offer. I had just asked her this morning to come over this weekend so we could practice again. Too late!
So the patient was African American and didn't have good veins at that. So not only were her veins harder to see, but they just were crooked, deep, or way too "wiggly." I put the tourniquet on and felt around. I finally found a hand vein that curved back and forth but it was the best she had. My instructor liked the site and told me to go for it. I inserted the needle, bevel up, and there was no flash. I was panicking when my instructor said, "Push it in just a little more." Flash!!! I pushed the button to retract the needle and threaded the catheter in. Blood started spurting everywhere (that's a good thing!) so I quickly connected the adaptor and popped a blood vial in. Full. 2nd vial. Full. I removed the adaptor and popped the IV tubing on. Beautiful. I got a warm rag to clean up the blood on her hand, and we covered it with a Tegaderm and taped the tubing securely. I had primed the Lactated Ringers so I opened the line and let it go. (I guess in Triage they just "eye" it and don't put it through a pump.) Drop. Drop. Drop. The LR were infusing perfectly in an IV that I had put in. It was working! Then later I piggybacked 2 bags of antibiotics, and they worked, too! (Why they wouldn't, I have no idea. But I was still on IV-high.) I had an issue with the 2nd bag, but the RN said sometimes it's just the position of their hand, and sure enough, we had the patient place her hand a different way, and the med started infusing. Good to know.
The day I performed my very first blood draw on a real patient (Jen doesn't count) I was teching and I called and texted pretty much everyone I knew (and Twittered!) and about died from excitement and pride and well, it was a little weird how excited I was. Well, that was nothing compared to the IV. The feeling of knowing I could successfully insert an IV made me feel almost like I'm a real nurse now - the IV is always the "big, scary" thing that everyone is petrified to do. Well, I've done it, and I did it well. So I can do it again. And it feels sooooo good! Major high. Other than things involving my fiance like our engagement, first kiss, picking out the ring, blah blah blah, oh and maybe getting accepted into the nursing program, or the birth of my furbaby puppy, it was probably one of the most exciting moments of my life. (And if you're not a nurse or nursing student, you probably don't get it - that's okay.)
Wow, I use a lot of parentheses. So many thoughts!
Anyways...
That was the highlight of my day, and I spent the rest of it helping check in new patients and then wasting time. Not kidding. The story...
We had this huge rush of new patients in Triage, all with what they called "contractions," one who said, "I'm not sure, but I think my water may be leaking. I don't know," and then a couple women who both said their due dates were tomorrow so they were sure they were in labor. Funny because most of the patients were in such early labor we couldn't even admit them. Anyways, I went in with the nurses and helped put on the fetal and contraction monitors, get their urine samples, answer questions, get their data... etc. After awhile, everyone was just chilling because that's what the Triage patients do - they sit there for a couple hours (unless they're obviously in active labor) so we can read a good amount of monitors to see what stage of labor (if any) the patient is in, and how the baby's heartrate is. I think it's more like a "we know you're not in labor, but we need to legally cover our butts" kind of thing. Not sure, but that's my theory because it's kind of monotonous. And yes, most of them end up being sent home. If you're contractions aren't under 5 minutes apart and completely regular, if you are in no obvious distress and have not had your water break, don't come to the hospital. The nurses and doctors don't mind, but you will be very, very bored and miserable waiting and watching and then being sent home.
So Triage got quiet really fast. Everyone just waiting to be sent home to walk around, have sex, do whatever they want to get their labor going faster. Then they'll probably be back tomorrow in active labor. It's crazy.
Our instructor said if we were bored, we could go study in the conference room. A lot of things happened in the morning and early afternoon, so there were a few of us who were bored out of our minds by 2:30/3. We went to the conference room and rested, talked, went to the cafeteria (yes, just because we were bored and hungry), came back, talked some more, and just waited for postconference. We were all completely absent from our brains by that time, one of us had a broken arm, another hurt her back when a patient attacked her this week at her tech job (seriously!), a few were hungover, I was in extreme fibromyalgia pain and had a migraine coming on, and of course we all knew it was the last day on the floor. We were slaphappy and exhausted, and our instructor looked like death (she has fibro too and was having a bad day), so we all agreed to leave a little early.
And now I am typing this as I babysit (which is insane seeing how much pain I am in from this day) and will momentarily take a nap until Mom and Dad come home. I'm with my nanny girls, and L Bug's grandma watched her today and let her talk her out of taking a nap. I literally had to drag L Bug into bed as she's screaming, "I'M (sob) NOT (sob) SLEEPY (sob sob)!!!!!" She's barely 2 so it was kind of cute, but also distressing at the same time. She's never that bad. All I could think was, "I feel like sobbing and yelling I AM SLEEPY!!!!"
This nursing thing - although amazing and fulfulling and perfect- is going to physically take every last bit of me. 3 more semesters + a summer externship. It seems impossible, but I don't know what else to do.
Oh and as a side note, Jen (my best friend, remember?) took her boards yesterday and PASSED! She's an RN! She was going to reschedule her test but failed to do so within 24 hours so either had to take it without studying at all or waste the money and pay to take it again. She told me she knew she'd fail, but she figured she'd already paid for it and it would be good practice, so she went. And passed. Without studying. That is so my best friend. She texted me this AM and said "I know you're in clinical but I need you to call me ASAP." I snuck into a hallway behind a door and called her. We were both almost crying. It was such a great moment. Then she called me tonight. She techs at a hospital and landed a job on her floor, which she loves. Apparently she talked to the nurse recruiter this afternoon, and she's having Jen start orientation on Monday. Tomorrow is her last day teching forever. She's an RN, and she starts making an insane amount of money Monday morning. She will be working on her favorite unit, loving every minute of it, and making the living she's worked so hard for. Snaps for Jen. I'm so proud of my amazing, crazy soul sister. 24 hours ago, she thought she was taking a practice NCLEX and she'd definitely fail it, and right now, she is an RN and starts work on Monday on her dream unit. Absolutely insane. God is pretty awesome. Oh, and she has a new boyfriend too. First "real" boyfriend ever. It's so sweet when life is so good.
Today, her day, almost makes me forget how far away from nursing I feel after remember what I realize at the end of each clinical day - my body cannot do this job for more than a couple hours. My heart can, just not my body. Everything starts aching and throbbing and crushing and burning. My energy dips steeply at about noon, and then I drag. I come home and load up on percocet, a muscle relaxer, a pain patch, sometimes a zofran... and I sleep for 2 solid days. Then during the week, I forget how hard it was and look forward to the next clinical. Then it nearly kills me, and it happens all over again. I think it hurts my soul more than it hurts my body.
One of these days, life will be okay. One of these days...
Since Thanksgiving shouldn't ever end, I guess it's not too late to share a post of Angie Smith's I found in the (In)Courage blog. It really inspired me on Thanksgiving - click here to read it.
An excerpt:
I've felt called to spend some time studying gratitude in an effort to work on my own negative tendencies and the Lord recently gave me an amazing glimpse into Scripture.
In Luke Chapter 17, Jesus is traveling to Jerusalem when He hears ten men with leprosy calling out to Him in desperation. Most likely, they didn't expect a response, but they were used to announcing their ailment whenever anyone walked by.
Jesus did respond, and He instructed them to show themselves to the priests. It says that as they walked, they were cleansed.
The Greek word for cleansed in this passage is "katharizo," and it means "to cleanse by curing."
After they are healed, one of them recognizes that he is not leprous anymore (the Greek for healed in this passage is "iaomai" which means to be cured) and goes back to thank Jesus.
So all of them are not leprous anymore but only one has returned to thank the Lord.
Upon falling at Christ's feet, Jesus tells him to "Rise and go; your faith has made you well." (Luke 17:19)
I was intrigued by the fact that while the rest of the Greek words refer to healing of a sickness, only the leper who returns is told that he has been made well.
So what is the difference?
Actually, quite a bit.
The original meaning of the word "well" in this passage is "sozo," and it means more than a physical healing.
It means that in the Biblical sense, the man was saved.
It seems gratitude is an intimate part of our salvation. This doesn't mean that our salvation is earned by it. But it does challenge us to think about how we are living it out that gift every day.
I want to encourage all of us to fall at His feet in gratitude, if for no other reason than that we are "sozo." Loved from before the beginning of time.
Let's be like the leper who returns in shameless gratitude, spilling out our thanks as we lay at His feet.
After all, He has made us well.
Speaking of Angie, her book is coming. Have you preordered it yet? I have. It's called I Will Carry You: The Sacred Dance of Grief and Joy. So. Excited!
And one last thing... her latest blog post brought me to tears... Permission to Hope. Start from the beginning of her story over at her blog if you're unfamiliar. In a nutshell, she has three beautiful little girls and when she was pregnant with the fourth, they found out she might not live until birth. She ended up living for a couple of hours and they named her and loved her and then lost her. Angie is pregnant again, and here's the highlights of what inspired me and quite honestly, resounded in my heart and soul because I've been there... I hope her words can touch you too.
It has been really difficult to go through this again, and I really covet your prayers as we face our fears. I know that the Lord is trustworthy and that I can believe in His goodness but it's not easy. Yesterday I spent a long while crying on my closet floor as I processed the fact that I need to pull out my maternity clothes again. I think I am reliving things in a new way as I sort through the things I wore with Audrey, tucked away in a corner I haven't really faced. I have the kind of memory that can smell perfume across the room and remember sitting next to my third grade piano teacher while pounding out a horrific version of the love theme from Romeo and Juliet. She said I was really good.
She lied.
Turns out she was in love with my father (yes, we let her go shortly after gifts starting arriving for him...my mom was not about to eat the cake she sent). That was my last attempt at piano, and I assure you that the human race is better for it.
I remember little things people have said, the way hospital soap fills a room with anxiety, the exact expression Todd had on his face when he told me he loved me for the first time. It's locked away in a little vault that opens with trigger points in my life.
Unfortunately, trigonometry, driving directions, and Spanish never made it into the vault.
I honestly feel like that's one of the reasons I love to write so much. It can get all tangled out and if I can just get it on paper it unravels a little and helps me connect the dots. The hard part about that is that I can't run from it when it's right in front of me. I have to dig around in my closet, past the wedding dress, past the girl's linen dresses, and into the corner I have not wanted to face. I opened a vacuum-sealed bag of maternity clothes yesterday and I could feel her again. I screamed at God because I wanted her back so badly I ached. Todd came and found me there, face-down in my pain, clothes spilled all around me.
"This is the sweater I was wearing when we found out. This is the shirt I almost returned because we got her diagnosis and I knew I wouldn't ever be big enough to wear it. This is a nursing gown I never got to wear, this is the dress I bought for the photography session..."
They are just clothes, I know.
But they were a part of my life with her.
I needed to have a little meltdown. I've been moving along as if I could get through it without feeling this, and I can't. I'm just not going to bother to try anymore because it isn't going away. I really want you all to know that I have struggled in my walk recently. It isn't that I don't believe or trust in the Lord. I do. I just haven't been as disciplined as I should be with my quiet times and spending time in the Word. It isn't like me to retreat so much, and I finally realized yesterday that there was a part of me that just felt like going it alone because the last time He let me down.
Is it false thinking? Absolutely. No question Satan wants me to be convinced that I am better off on my own, trusting that doctors and logic will sustain me. I confessed this to the Lord, and I confess it to you all. Many times I have shared about my spiritual life, urging you all to be disciplined and faithful, and I owe it to you to tell you that I have just not been there in the last several weeks.
Truthfully, I have not felt permission from the Lord to write on the blog because I knew there was a disconnect between what I wanted to say to you and what I felt. I know He wanted me to focus on Him, and sometimes that means stepping away to get my priorities in check. I don't want a ministry if I'm being hypocritical or false. So, all that to say, I am working to get back in my groove... :)
I want to believe that this time is different, and I do feel a peace about everything. The night before my first appointment (I even switched doctors because it was so hard to think about going back to mine) I started letting my thoughts get away from me. I pictured the room, the gel, the screen. My heart was pounding and I pleaded with the Lord to give me a sign of hope. Lord, you don't have to tell me the baby will be fine, and I don't expect you to. But would you just let me know You are there? That you haven't let go of me?
There was a time of great hope during my pregnancy with Audrey, when an ultrasound seemed to conflict with her diagnosis. A few weeks after we learned she wouldn't survive we were surprised to see that many of her original diagnoses were not what they thought. That evening we went out to dinner for my nephew's birthday and I photographed Kate asleep with a balloon in her hand. I posted the picture and said that when I saw her I knew that we were doing the same thing; against all odds, we were holding on to hope. I actually wrote about this event in my book because it was such a pivotal moment for me, and the picture of Kate is featured in that chapter. It was a symbol that the Lord used to remind me that He was with us and that we had permission to hope.
When the sweet technician did my scan a few weeks ago, she had the screen turned away from me. Todd could see it and he was trying to make out what was happening. We knew it might be a little early to see a heartbeat so I had prepared myself that we might not get that reassurance. Just after she started, she said "148 beats a minute!"
Oh, Jesus. Thank you. Thank you.
She continued to look at the screen while I looked at Todd. All of a sudden she giggled a little under her breath.
"Well I can't say I've ever seen that before! That is so funny. Look at this, Angie."
She started to turn the monitor as her words filled the gap in the room. She shook her head warmly and continued, having no idea how it would bless me.
"It looks like the baby is holding a balloon."
I stared at her and then I took a look for myself and indeed, it was uncanny. I felt a peace come over me when I saw it because I knew He had done it for me. He hasn't forgotten how much it hurt me and He knew I would understand Him. I felt my eyes get hot as I thanked Him for letting me sense Him so strongly in a moment I needed to believe He was there.
She repeated herself and I nodded.
He isn't so big that He can't find His way into an exam room. I couldn't wipe the smile off my face as I agreed with her.
"It does look like the baby is holding a balloon."
I let out a 2 years-long sigh and finished the sentence in my head.
And so are we, Lord...
So are we.
Amazing, no? These words touched my heart because I, too, get attached to smells and items and anything. The smell of certain plastics immediately take me to the operating room. Putting on a hospital gown for an MRI sends my mind to laying in a hopsital bed, 9 years old, watching the rain fall out the window. I can't wear certain items of clothing because of the grief I felt in that shirt or with that bag. I can't drive by certain places without chills shuddering up and down my spine. Certain songs take me to the times I have been laying on the floor screaming at God or curled up in a ball in my closet, sobbing into a pile of clothes, struggling to catch my breath. I have meltdowns all the time... usually in a longing dispair for what isn't, what cannot be. But you know what? God has been there every single day through all of it, and He's been beside me through every hard time, to see each tear fall.
He was there about a month ago when I had just failed a nursing paper, I was in over my head in school and life, and Jonathan was taking a class that made him only come over a couple times a week. (He's usually here every day.) Then, I had a day of appointments. A new pain psychologist helped me realize some things. The appointment was a good three hours long and just emotionally draining. I need to get my life down to a quota, not stress my tolerance. She told me that my pain - physical and emotional - is always going to be there. If I do less to handle it, if I am deconditioned, the painful thing or the physical pain is just going to hurt more. She told me to take pain out of the equation and no longer make pain the determinant of what I do or don't do. She told me life is like an airplane and said my life is turbulant, and the plane is coming down. She asked me what to do when the life masks pop down from the plane ceiling. All of a sudden the light bulb went on. I remember exactly the soft tone of voice I had when I slowly said, "I put mine on first before I help others." That was it. I'm killing myself trying to save the world when my own "life mask" isn't on. And then I saw my liver doctor, which is usually emotionally painful. She's told me in the past that she had a patient with my condition, and after she got pregnant, she advised her to abort the fetus because the pregnancy and birth would kill her. That has always stuck with me, but this particular day, we discussed the genetics of my disease and how it's thought - although no one knows to what extent or how - to be somehow genetically composed. She said my children would have a small chance of having liver problems, and even my sister's children or if my mom would to have more children, were to be slightly at risk. So then of course, I immediately feel guilty for tainting my entire family's offspring (even though no such offspring exist), and I also start getting sick to my stomach because although I'd risk my life to carry a baby and bring her into the world, even a small chance of passing on this hell I've lived through is without question just not going to happen. I would never, ever wish this on anyone, God forbid my own children.
So an hour long drive home got my mind in a mess of stress and fear and exhaustion and something set me off later that evening (no idea what...) and I literally went into a crying hysteria that lasted about 3 hours. It went into a full blown nervous breakdown. My mom came into my room twice to try to calm me down, and I know it upset her to see me like that, but I guess that's what moms do best. Eventually I texted Jonathan who was in his class and told him to come over ASAP because it was an emergency. I'd never in a million years ask him to do that, but I knew if I didn't get my strength to me soon, if I couldn't sob in the only arms who could stop the tears, I wouldn't get out of this fit that was suffocating me and stabbing knives in my stomach. I'm not even sure I should type these next words because it makes me look so lame and pathetic, but when I'm at my absolute worst and cannot find the words to talk to God, his arms are just a little longer to reach God and bring Him to me. Jonathan connects me to my hope, and until I'm strong enough to hope on my own and learn to trust God just a little better... until my crippled legs straighten and my broken hands heal, he's the only one who can pick up my broken pieces and place them in God's hands.
That's what true love is, and that is what the grace of God means to me.
How thankful are we for the love of God, the grace of God, the mercy He has for His broken ones. He wants us to hope in Him. Even if we don't feel like hoping anymore, even if we can't see the hope. It's there. Hope is a powerful, powerful thing.
Today was clinical, but we got off early because my instructor had to go out of town.
Instead of seizing the day and getting things done, I've been thinking.
And I've come up with this.
It's my favorite time of the year, and I don't have a spare second to enjoy a minute of it. I don't have time to enjoy the stress of shopping, make special gifts for my loved ones, or decorate my room insanely early just to enjoy my pink tree a little longer.
I am miserable.
And I know exactly why.
Even worse, I know what will make it better, but I also know the cure comes with an entire set of new problems.
So the original problem is this...
I'm too busy medicating myself to get through each day of this education with a drug that has pretty much taken all but my life. It's a vicious circle - I want to graduate and be a nurse, but with my health like this (and masking it with a drug that I can barely even tolerate), I couldn't even tell you when I'd realistically be done with school. By then, I'd probably be past my strength anyways.
For weeks now, I've been wrestling with a big decision. A decision I don't want to make, a decision I don't want to have to make. And you know what's funny? I thought I finally came to a conclusion today, and then there it was, in my inbox.
These words.
When considering a difficult decision, look ahead in your life toward the day when you will die, and consider: which option would you regret most not doing. In most cases, your answer will be immediately clear.
(m. zetty)
What I would regret most not doing? The very thing that is trying to kill me. The very thing that is stealing my happiness. My drug, the thing I keep coming back to even though I know it's going to be the thing that kills me...
Nursing.
I need it to have a job so I can have health insurance so I can get married, but do I need it for more than that? Do I need it to complete me? Knowing how I could make a difference in the lives of so many people every single day makes me think yes. Seeing the politics of the job and the insane conditions of working out there make me think it might be easier said than done.
Then there's that minor thing - finishing nursing school. It's all a game out there. Seeing how I should have graduated already, I'm in classes with people who act like 12 year olds, and I have professors who act like catty teenage girls among each other and nasty, conniving micromanagers to their students. I'm in a school whose only goal is to raise board passing rates, and they're willing to sacrifice our sanity to make sure they get ahead. Professors give us exams on questions they can't answer themselves and grade our papers using their opinions of us as their rubrics. Then get out there in the work force, and well, I nurse tech'ed so I know how it is. The nurses where I was probably had ulcers and panic attacks and will quit from burnout by the time they're 30. Why would I want a life like that? All to help a few people?
Or is it more than that?
I think it's more, but lately I'm not sure. I just know I'm not as strong or as resilient as I was last time I attempted this, and I know for a fact that my mental state any given day since the last week of August has been a polar opposite of what it was in July. I was finally getting better, things were starting to look up. Then with one fell swoop, I decided to force myself to limits I was sure I'd be strong enough to reach. I decided this was the only way to fight for my future, my happiness, my impending marriage.
So don't ask me what I'm supposed to do now, because I don't know either. Take a semester off? Keep killing myself each day? Decide to settle for that degree in Integrated Health Studies?
All I know is that I have no idea how I'm even going to get through the remaining two weeks of school and then finals, so how could I ever get through three more semesters?
So much is at stake each way, and anyways, if I wasn't doing this, what else would make up the difference? Would it be enough? Would it be the right thing? How would I know for sure?
Heaven is the face of a little girl
With dark brown eyes
That disappear when she smiles.
Heaven is the place
Where she calls my name
Says, “Daddy please come play with me for awhile.”
God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m aching for.
God, you know, I just can’t see beyond the door.
So right now...
Heaven is the sound of her breathing deep,
Lying on my chest, falling fast asleep while I sing.
And Heaven is the weight of her in my arms,
Being there to keep her safe from harm while she dreams
And God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m longing for
God, you know, I just can’t see beyond the door.
But in my mind’s eye I can see a place
Where Your glory fills every empty space.
All the cancer is gone,
Every mouth is fed,
And there’s no one left in the orphans’ bed.
Every lonely heart finds their one true love,
And there’s no more goodbye,
And no more not enough,
And there’s no more enemy.
Heaven is a sweet, maple syrup kiss
And a thousand other little things I miss with her gone.
Heaven is the place where she takes my hand
And leads me to You,
And we both run into Your arms.
Oh God, I know, it’s so much more than I can dream.
It’s far beyond anything I can conceive.
So God, You know, I’m trusting You until I see
Heaven in the face of my little girl,
Heaven in the face of my little girl.
Written by Steven Curitis Chapman after an accident killed his 5 year old daughter last year.
This song (and story) is especially striking to me because his beautiful little girl could have been me... in fact, it was me... only I lived to tell my story. Lived to come up with questions, lived to cry myself to sleep, lived to realize life is not fair. But I guess when the children don't make it, it's the parents who take on the story, questions, tears, and realizations. The agony of it all.
Here's the end of my story...
Heaven is the face of a little girl
With dark brown eyes
That illuimate the world
Heaven is the place
Where she is now free
Where it's always enough, she'll have no tears
Only life
Heaven is the sound of her sighing in peace
Lying on my chest, rocking her to sleep as I sing
And Heaven is the air she can finally breathe
She's found the answers and all her hopes fulfilled
Heaven is a sweet, sunshiney day
And a thousand other little things I miss with her gone
Heaven is the place where she waits
She'll take me to you
One day,
right into Your arms
