This is my story. Well, really mostly stories from the ER, along with a few thank you notes and some thoughts. Please
read the whole thing. I just want to share some of my experiences with
you. They aren't all good, but from the bad I've grown and learned a
lot. I feel closer to God than I've ever felt, even when, years ago, my life seemed
perfect...
It's been a crazy ride. And I've been
through some crazy experiences. Some good, some funny, some amazing, and
sometimes some not so good experiences. But from everything that I've
gone through the past six or so months, I've learned a lot about life and
people.
Because of my condition, I had to visit the
Emergency Room a LOT the past year and a half because there would be
times that my pain medicine at home just couldn't take care of the pain
that I was in. Eventually, when the nurse at the triage desk saw me
coming he/she would know what to do and I wouldn't have to go through
the 10,000 questions that you would normally have to go through and we
could skip registration and usually go straight through without waiting
in the waiting room (That was nice, especially because of the amount of
pain I was in).
But just because I got in quickly,
didn't mean every visit went smoothly. We've discovered there are
different kinds of nurses: the ones who really care about you and want
to help because they love what they do, the ones who do it only because
it's their job, and the ones who have done it so long that they're just
going through the motions, not realizing how they treat you. Now, I've
had all three of those nurses, but two nurses in particular stick out to
me.
In the category of "not-so-good experiences", I've
repeatedly been put with one nurse who just absolutely flabbergasted us
the first time I had her. They say, "Don't judge a book by its cover",
but when I saw her for the first time, I knew it wasn't going to be a
fun experience. She looked tired, grumpy, and like she just really
didn't want to be there (Given it
was like 2:00AM, but still,
it's no excuse). When you first go in to the room, the nurse asks why
you're there. My doctor had called ahead to make sure they knew what my
problem was and what medicine I need, but even then I still have to
explain my condition. I gave her a short version of my story and she
went and got my medicine. She came back and while she was giving me my
medicine, I gave her a longer version of my history and what was going
on, and after I was done, she started to tell me that if I had done this,
or if I had done that differently, then I wouldn't be laying there on
that bed in the ER getting all these drugs. That night, my dad was with
me and he sat there next to my bed just speechless. How could this woman
tell me that I was living my life wrong for a year and a half? How
could she sit there and look me in the eye and say that if I had
exercised more, or if I had stopped drinking cokes, that none of this
would have happened? I would have exercised if I could. I like Dr. Pepper, sorry I'm not sorry! But that didn't cause my nerve damage! She had never met me. She doesn't know what I've
been through. She doesn't know how I came to this condition. Actually,
nobody does, and we probably never will. So she gives me my medicine
while she's telling me this, and then leaves. It's been 30 minutes, I've
felt no pain relief at all. I tell my dad and he goes to get her and
when she comes back, she just says, "Well, I'll just go ask the doctor
what he wants." Now imagine that you're in excruciating pain, been in
the ER for 45 minutes by now, and your nurse is rolling her eyes when
you ask for pain medicine. She comes back and says the doctor said to
give me Phenergan and more Demerol (the pain medicine). So she gives it
to me, without saying a word I may add, and, what do you know! I feel
that burn going up my arm from both medicines (And trust me, you know
when you get the Demerol). So what does this tell me? Well, in my mind
this tells me: "What did she give me the first time? A placebo? Just
saline?" Most nurses don't agree with the treatment I receive, but that
doesn't mean you change the doctor's orders. Obviously, we have no proof
that she used a placebo, and we'll never know, but if I could, I would
prove it to you. A second time I had her, it was a couple months later
and when she saw me it was like I knew exactly what she was thinking,
"Oh great, why are you here again?" I know what you're probably
thinking...
Jenae, you don't need to assume that she was thinking that. That's just making a rash judgement. Well,
we get in the room and she says, "You again? Scott and White didn't fix
you?" ... Really? How about, "Hey, how are you feeling?" or "I'm sorry
you're in here again!" ... So she gets the doctors orders and gives me
my medicine. This time my mom is with me, but she knows about this nurse
from what my dad and I told her. This nurse can't say much while giving
me the medicine, (and she actually
is giving me medicine),
because my mom spends the time telling her about what happened at Scott
and White (That's a whole other story...), and all about the trial
stimulator that I was going to be getting in a few weeks. So she tells
me that she hopes it works, because she "knows how horrible and
dangerous it is to be putting so many narcotics in my body all the
time". Yes, I've heard that speech before, from about every other doctor
and nurse at the hospital. So weeks pass and I have the trial for the
spinal cord stimulator. As most of you know, it worked GREAT. I hadn't
felt so good in
months! But of course, all good things must come
to an end, right? The trial only lasted a week, and it took about 6 more
weeks until I finally got the permanent one. Well after feeling great
for a week and not having to take as much pain medication, going back to
no stimulator was not a good experience. The first couple of days
weren't too bad. But come the third or fourth day, that pain began to
return to my body and I sure felt it. So, naturally, I ended up back at
the ER. Both of my parents came with me this time, and, of course, you
know who my nurse was. Yes, this same woman. Now, I thought to myself,
"Maybe third time's a charm?"
Wrong. She takes one look at me,
rolls her eyes, grabs my wheelchair, sort of chuckles out of disbelief,
and takes me to my room. I was already crying, but now I'm just sobbing.
I did NOT want this woman taking care of me... So what happens in the ER is a nurse can't give
you medicine without doctor's orders. What people don't realize is, you
can't just go in and talk to one person and get medicine and be done.
You have to tell triage what's going on, then your nurse, then your
doctor, and then and only then can you receive medicine, (and that's IF the doctor will even give it to you). She puts me in a
room, says something along the lines of, "I'm guessing the same thing
right? What happened with the stimulator? I thought that was supposed to
fix everything. Why are you back here
again?!" We explained what
happened and she just says okay. Now, I know that I'm not a nurse's
only patient. I get that. But for me to go to the ER, I have to be
bawling and screaming because I'm in so much pain (And I'm usually the
only person making noise in the ER which would be embarrassing if I
cared at that moment in time). She had a patient that she had to take up
to a room. We asked very nicely if she could at least start the IV and
get the doctor in here while she did that so we could get the ball
rolling, but that wasn't the case. She simply says, verbatim, "Look, I
get you're in a lot of pain right now, but I got a guy that needs to go
upstairs, so you'll have to wait a minute." (More like 20!!). You may be
reading this thinking that I'm exaggerating, but I promise you, I'm not
(Just ask my parents). She gets back and after the doctor sees me she
puts my IV in and brings me my medicine and starts talking. She isn't
the only not-so-good nurse I've had in the almost maybe like 30 times
I've been to the ER, so I've learned to tune them out and let my parents
do the talking for me. I was crying and in a lot of pain, and she kept
telling me to calm down and breath while she did the IV. Well, I tried
as hard as I could (I got down to like the sniffles...). She tells me to
hold out my arm, so I do, then she says, "Relax!" and shoves it down on
the bed, which makes me more upset. But she gets the IV in and starts
the fluids and starts the medicine and she starts to have the same
conversation as the first time! Telling me that I was doing something
wrong with my life and that's why I ended up there. Well, this time, we had had it up
to HERE with her (Imagine me, holding my hand up to an imaginary
height). My dad just stands up and says, "You know, she's in a lot of
pain, can you just give her her medicine please?" Well, boy, did that
shut her mouth! I would too if somebody like my dad, who of course
always wears his Harley Davidson shirts when he goes, said that to me!
When she left the room, I just said, sort of groggily since I had just
gotten pain medicine, "You go, Dad!" It needed to be done. And the rest
of the night she was nice and quiet.
I know that my
treatment plan wasn't ideal, and pretty much every doctor in the ER told
us that they didn't agree with it. Some would even refuse to give me
the amount that my doctor ordered because they disagreed with it. I know
I'm 19, and I used to take a large number of pills every day. It isn't
my fault, and it wasn't by choice. I didn't ask for a concussion, (Okay,
maybe I kind of did on that one...asking my dad to be the one to blob
me), I didn't ask for Mono, I didn't ask for Occipital Neuralgia, and I
for sure didn't ask for Fibromyalgia. Being in college and being
responsible for taking medicine four times a day isn't as easy as it
sounds, especially when you leave your dorm in the morning and don't get
back until late afternoon. I would never ask this on anyone, not even
my worst enemy! Maybe just Satan...
But you know, yes I
did have a lot of not-so-good and very upsetting times, it wasn't all
that way. I've had some really amazing experiences and met some really
incredible people along the way. My favorite nurse, her name is Buffy,
every time she would see me coming in, she would immediately say,
"Jenae! Honey! Come on, I'm going to take care of you." no matter who
was at the triage desk or what she was doing at the moment. Even if I
didn't have her as a nurse, she would come see me in my room and check
on me. I remember one time she was my nurse and she had a nursing
student with her. She told him to do the IV, but to never do it in the
crook of the elbow. What he didn't know, is that's one of the best places on my
arms. He's looking everywhere on my hands and forearms and he even blew a
vein, and so he goes to get Buffy and she comes in and says to me,
"Jenae! Why aren't you telling him what to do?! You know where your
veins are, you know what you're doing!" And she came in and got it on
the first try. He was a little embarrassed, but we had a good laugh. We
explained how I've been to the ER so many times and he understood what
she meant. She was right though, there have been times where I've had to
fix the blood pressure machine or the thing around my finger or my arm
because the nurse didn't do it right and couldn't get my blood pressure.
It's rather amusing when I'm the one showing nurses things. My parents
and I get a good laugh out of it every time (So does the doc!) Another
time I remember I came in just sobbing and shaking because I was hurting
so bad. She was at the triage desk and when she saw me come in she
immediately stood up and told someone else to take over because she had a
patient that she had to take care of. She took me straight back and let
me answer all the questions in the room after I was calmed down and had
some pain medicine in me. She made it a lot easier to be there in the
ER, and I was so blessed to have her as a nurse the many, many times I
had her. She is definitely in the right place and doing the right job!
So
there's been some bad times, and there's been some good times. But
would you believe me if I said there were funny times too? Hospitals
aren't all scary and depressing like some people think they are.
Sometimes they can be fun. Or, funny. I was going to tell this one story
but...well, never mind. ;-) But one time we were in the Waco ER, and I
was waiting to be transported to Scott and White in Temple, and I really
needed to go to the bathroom. So I'm wondering the halls of this ER and
I look into this one room and I see something. Here's the picture.
You'll know when you see it.
There's
a mannequin in a hospital gown!! At first glance I freaked out because I
thought it was a real person! I literally jumped backwards and gasped
out loud, then turned out around to make sure nobody was looking.
Thankfully nobody saw. I got back to my room and told my mom to come
look and she had the same reaction, and we both just laughed all the way
back to my room. There was one nurse one time
and her hand was shaking really bad, and she was sent to do my IV. Well,
I was still afraid of needles at that point, so I'm just like,
"Ummm..." and my brother is sitting behind her with the funniest
expression on his face, like, "Is she serious?!" But she got my IV in on
the first try and it didn't even hurt. She knew what she was doing,
and, yes, even though it scared me half to death, I tried to trust the
nurse no matter what. Other times we've seen some crazy families,
overheard some funny conversations, and been through things that we
can't even share with people. The more time you spend in the hospital in
the middle of the night, the crazier things can get.
I've
saved this story for last, simply because it changed my entire view on
people. It sort of mixes in with all the different categories, depending
on the time of the story. Remember earlier how I said, "Never judge a
book by its cover"? Well, with the nurse, she was an open book,
and she let her feelings show...or, she just said them out loud... But
in this situation, this man was the classic story of misjudgement. This
was one of the few times that we had to wait in the waiting room. He was
an elderly man in a wheelchair, who...didn't seem to be all the way
there. He kept asking the security guard the same question, I don't know
what it was, we were too far away to hear anything. But the guard
looked rather frustrated so I could tell this guy was a little bit of a
nuisance. He noticed how much I was sobbing and how upset I was (I was
in a lot of pain), so he came over and started talking to us, well,
really my dad. My dad told him a little bit of what was wrong and he
just said, "Oh bless your heart sweetie." and put his hands on my
shoulders. Now, when I get bad enough to where I have to go to the ER, I
can't even have people touching me because it hurts so bad. So my dad
and mom were both trying to explain to him that touching me hurts, but
then we all heard what he was saying. He was praying. He was talking to
God, asking Him to take this pain away from me and let me live again. It
was the most beautiful prayer that I've ever heard, and I felt like it
was God's hands on my shoulders, not his. It simply brought me to tears.
I couldn't hold it back, I just started sobbing even more! (Which made
my parents think that he was hurting me, but he wasn't). How could I
judge this man so harshly without giving him a chance? I felt like he
was a guardian angel, or God Himself, there to calm me in the midst of a
storm. I never felt so at peace in the hospital before. I didn't see
him the rest of the night, or when I was leaving. I'll always remember that moment, and how close
to God I felt. I found a quote that describes it perfectly. It says, "
Those who don't understand true pain, cannot understand true peace."
-Anonymous.
I
know this was a really long post, and if you're still reading, then
thank you for sticking with me! I could go on and on with different
stories, good and bad, all day long, but even I wouldn't read a
post that long! Just trust me when I say, it's been a long and
difficult, yet fulfilling, journey. It'll never be "over", but for now,
I'm not in the hospital, I'm not in as much pain, and I'm slowly getting
off all the medicines I'm on. I registered for fall classes, I'm doing
physical therapy every day in our pool, and I'm ready to get back into
life! I've spent a lot of time away from my friends, and a lot of time
by myself or with my parents. Which isn't a bad thing, I love my parents
and would die if anything ever happened to them, and I love spending
alone time with God. But I miss my friends.
And I am ready to be around people again, and I want to feel like I'm a
part of something again. Like I belong somewhere. It might take awhile
to get back into the swing of things, but I'm ready, and I'm willing to
do whatever it takes. I thank the Lord every day that this spinal cord
stimulator works and that I finally found the answer to our prayers,
other than narcotics. I can't even begin to describe how grateful I am
for you, yes YOU, for reading this, and for believing in me and praying
for me since the beginning, or even since yesterday. I know that there
are people out there that I don't even know who are praying for me. And
THAT, my friend, is more comforting than you'll ever know. God puts
people in our lives for a reason, and he places us in situations for a
reason. I may not know mine yet, and I may still be angry with God, but
all I know is He is a giving God and a gracious God. He will set me free
from this burden and someday I'll be able to help somebody through
their own situation.
Here's where I have some people to thank...
I
have been to so many doctors, I honestly can't count how many there
were. But there are three that stuck with me till the end, along with the Boston Scientific team. Paul Watts is
my pain management doctor, and good family friend. We started going to
him after my neurologist moved away from Abilene back in August, and he
has been there for me ever since! I've had doctors tell me "Oh it's just
a headache." or "It's just migraines, try this." They weren't just
headaches, and they definitely weren't just migraines. It was hard going
from doctor to doctor and getting no results, or having them all say
the same thing and then just give up right then and there and not go any
further. But Dr. Watts stuck with me and never gave up on finding a
solution to the pain I was having! Which led us to Dr. Chad Stephens. He
works in Decatur at North Texas Sport and Spine, and welcomed us in with open arms!
He did the stimulator that went on my ear, (which was not a fun
experience...), and he also did the trial stimulator in my back, with
help from the Boston Scientific team. For the trial, I had to be awake
so I could tell them what I felt and where I felt it. And trust me, it
was a terrifying experience. I HATE the operating room. I've gotten used
to needles, but I will never get used to the OR. But despite the
bad experience, Dr. Stephens kept me calm the whole time and he
encouraged me to keep going and to remember why I was doing this. He had
his iPod on the Christian Pandora station playing in the background,
which helped me a lot, because I could focus on the music rather than
the procedure. Along with Dr. Stephens was the Boston Scientific team:
Todd, Brad, and Rebecca. They were in there with us, sort of guiding him
and then programming the remote. They were also very encouraging to me,
helping me along and getting me through it. The week of the trial, Todd
and Brad would call me just to check on me and see how I was feeling
and how the stimulator was working. I was also able to call them and ask
them any questions I had, at any time of day! And they remembered who I
was and everything. It was pretty awesome. For the permanent one, I had
Dr. Stephens' partner, Dr. Nieves. He. Was. Amazing. He agreed to do
the surgery without even meeting me first, because we weren't able to
get down there for pre-op (which is unusual for a doctor to do!). He was
very kind-hearted and made things so much easier to go through. Before
they took me back, he actually prayed over me and for the procedure to
go well, which absolutely calmed every nerve I had left. Afterwards, he
went out to the waiting room and just hugged my parents and told them
how good I did and that everything went perfectly and it was just so
encouraging to have a doctor that treated you like you've known him for
years, when really you only met him the day of the surgery. All of these
people have one thing in common: they never gave up on me. And I
can't thank them enough for that. I'm actually in tears writing this
because I'm just so happy that God placed them in my life at exactly the
right time. It may have been a little bit later than I would have
wanted but it all worked out in the end. Thank you, Dr. Watts, Dr.
Stephens, Dr. Nieves, Todd, Brad, and Rebecca, and Boston Scientific for
making such amazing technology. I am blessed to know you.
We moved here 13 years ago,
because my dad got the Youth Ministry position at Hillcrest Church of
Christ. He's now the Family Minister and a big part of the church. I've
always been involved with the church, whether it be VBS, mission trips,
VIP Camp, retreats, Trek, HEB Camp, and even teaching. But for the last
six months, I haven't had the privilege to even attend church. Because
of my condition, I've had to miss Trek two years in a row, go home from
teaching at Encounter, miss helping out with VIP Camp, miss HEB Camp,
and miss a couple of mission trips. All of those events mean a lot to
me, because of the memories I've made in the past at those places. So you can imagine how upset I was each time having to tell myself, No, Jenae, you can't do it... I'm sorry...
But for the past six months, my church family has been there for me,
even when I couldn't be there with them. I can't even tell you how many
cards I've received in the mail from past Sunday school teachers, close
family friends, even people I don't know! But that's what makes it so
special: they're all my family. Angie Pittman was my boss at Taco Casa
my sophomore year in high school, and I've known her ever since. But
through her health problems and mine, we've become closer and closer.
I've always looked up to her as a Christian role model, and through our
illness, God has brought us together as sisters in Christ. There may be
over 900 people at Hillcrest, and I probably know maybe 150 of you, but I
want to thank each one of you who kept me in your prayers the past year
and a half, or even maybe just the past six months. Prayer is powerful
and when people come together for one specific purpose, they can move
mountains. It might have taken awhile, but this mountain has been moved,
and I couldn't have done it without my family, my church family. I feel
more loved and cared for than I ever have before, and I just wish there
was more I could do to thank you. Whether you said one prayer or a
thousand, you mean the world to me, and God heard you. Take it from me,
never give up on life. When you have 900 people behind you, ready to
take on Satan with an iron fist, you can do anything you put your mind
to. So to my church family, thank you. Thank you for taking down Satan
and thank you for keeping me alive through this rough patch in my young
life. You are truly a blessing to me.
These
verses below are some that really helped me get through this past year
and a half. They were very encouraging to me and I hope that they can be
to you, too.
"The prayer offered in faith will make the sick person well. The Lord will raise them up." James 5:15
"Lord, look at my affliction and my pain and take away my sins." Psalm 25:18
"The sufferings of this present time are not worth comparing with the glory that is going to be revealed to us." Romans 8:18
"The Lord is close to the broken hearted, and saves those who are crushed in spirit." Psalm 34:18
"Cast all your anxieties on Him, for He cares for you." 1 Peter 5:7
"We have this hope as an anchor for the soul, firm and secure." Hebrews 6:19
"God's voice is glorious in the thunder. We can't imagine the greatness of His power." Job 37:5
"Always be joyful. Never stop praying." 1 Thessalonians 5:16-17
"Have patience. God isn't finished yet." Philippians 1:6
And of course, "He will keep you strong till the end, so that you may be blameless on the day of our Lord Christ Jesus." 1 Corinthians 1:8
I
learned a lot since January of 2012. I learned that some people don't change, and some people
aren't what they seem. I learned that some things don't last, and you have to say goodbye to certain things. I learned that even when you feel like you've
lost everything, you'll find that you've lost nothing. I also learned
that some medicines can make you sweat, or gain weight (Ugh, still
working on getting those pounds off). But the most important lesson?
Your family will always be there for you. Even at 4AM. Even when you're
screaming in your sleep because you're in so much pain. Even when you
have a nurse that you just want to punch in the face. They'll
even make you do some things you don't want to do, like get help. But
I'll look back on this year and a half and know that I had the best
parents to take care of me, even when they had work the next day, or
even if it was their birthday! (Sorry, mom...). And to know that my
brother and sister would come have dinner or just sit with me at the
hospital while my parents were gone, is just so wonderful. To know that I
have my church family behind me every step of the way is absolutely
incredible, and hard to fathom sometimes, knowing you have hundreds of
people ready to help you. And to my best friends, who are more than just
my best friends, my sisters and my brothers, it's no coincidence that
God made our pathways cross. You mean the world to me. Please, please
never give up on me. Know that you're more than my friend, you're my
brother or my sister in Christ. All of these people, I can't even name
because there's so many, and those people I don't know, they have all helped me in some way or another. Thank
you. Thank you.
Finally, it is well with my soul.
From my very first procedure....
To the final chapter.
It's time to start my new book.
Peace and Love,
Jenae
