I don’t want your permission.

One of my favorite quotes of all time, and it really sums up this journey for me, personally. :)

The loss of independence is something that is so difficult to deal with after experiencing a ruptured brain aneurysm/brain injury/brain trauma.  After surviving surgery and being monitored in the hospital you’re good to go, right?  Wrong.  No.  Think again.

Maybe it would be different if we were at all prepared for the road ahead of us, but we weren’t.  I wrote about being terrified in my last post, and now I want to share with y’all how difficult it is to be a child in an adult body.  That’s honestly what this experience is like.  You go into the hospital as an adult, and you leave as a child… In an adult body.  You have to get permission for everything, it seems.

Everyone is on guard about everything.  For the really independent types (*cough* Robin *cough*), it becomes overwhelmingly obnoxious, fast.  Back up, let me live, please.  Just be there if I need you.  Don’t just assume that I’m incapable of being “normal” anymore.  Yes, I know I just survived something that “should have” killed me, but I’m here.  Can we just figure out this “new normal” together?  Now give me some space to move, please.

We need you to be there for us, not hover over us every single second.

It’s just so weird starting over with your life, in the middle of your life.  Well, I was 24 when my brain “exploded,” so I’m not quite in the middle, haha but I was an adult.  No adult just starts crying in the middle of an aisle at a grocery store.  Why was I doing that?  Because my brain was totally overwhelmed.  I would go to another aisle just to regain a sense of normalcy and one of my family members would rush around the corner looking for me because everyone was on edge.  Why?  Because nobody really knows how you’ll be after you leave the hospital.  I remember that day because I just wanted a certain soup and I couldn’t find it amongst all the soups, then all of the noise started bothering me, and awful fluorescent lighting, and I just started crying.  I mean actual tears, like a toddler!!!  It was embarrassing because that is so not me.  Ever.  That was one of the first incidents where I began to question “Who is this girl, and what am I going to do with her?”

I read up a lot on brain injuries and things that can exacerbate issues, complicating recovery, so I began acquiring permission for everything.  I didn’t want to be treated like a child, but like a child, I know I needed to test the boundaries so I would know how far I could go.  It was so annoying!!!  “Can I have caffeine?”  Let me just call my neurosurgeon’s office and speak with them.  “Can I take Sudafed?  I know it has pseudoephedrine in it and I don’t want to take anything that will cause my in repair brain to get overly excited.  I don’t want to have a seizure.”  Let me just call my neurosurgeon’s office and speak with them.  “Ow!  I was reaching for something in a cabinet and this canister fell and hit my head!  What should I do?!”  Let me call my neurosurgeon’s office and speak with them.  Yes, that really happened at work one day.  Prior to February 2012, I would have laughed any of these incidents off (except the crying in the grocery store haha… That just wouldn’t have happened unless something really awful had happened) and went about my day. But now I had a reason to protect myself the best way I could from the outside.  I can’t control what happens inside my body, but I can control what I put into it and the conditions I place it under, externally.  Health anxiety and obsession.  Research everything, question everything, check it once, check it twice.  Then make a move.  That’s been my life these past 19 months.  I have calmed down considerably, but I am still very cautious about what I take in, my stress levels, my environment, and I still question my doctors.

I was so independent that for me to have to ask for permission or be told to do/not to do something really bothered (sometimes still does bother–but I know it’s in my best interest so I’m more at peace with it) me.  I was told not to drive for over a month, the day I left the hospital.  I remember the first time I drove again and I took less heavily trafficked roads with my older (brave) brother, and I felt like maybe I might be okay.  I remember the first time I drove at night, again.  I remember phone calls and text messages “Just to check in” on me when I would go from one place to another.  Stop hovering, I wanted to say!  But I know this “brain bubble” came out of nowhere and nearly ended my life, so I know that those who care for me the most were just making sure I was okay.

The loss of independence is one of the first signs that life may not be as normal as you thought it would be before you left the hospital.  I was ready to rock and roll, go to work full time, do this, do that.  No, no, no, and no again.  Sorry ’bout ya!  It is so frustrating to become a child in an adult body.  For those of you who have children, I imagine that your relationship(s) with them are much like mine are with those who care for me, except reversed because you are the parent.  Honestly, they just want to make sure you’re staying safe, but it is challenging to adapt to “the new normal” when you’re not given a chance.  That’s how it feels, like you don’t even have a chance.

After hearing so much of what I couldn’t do, I just asked my neurosurgeon (and neurologist) to give me a list of things I can do. How are we supposed to recover if we aren’t allowed to recover?  It’s entirely frustrating, all the way around.  I had to learn to parent myself, get in bed at this time, fall asleep by this time, wake up by this time.  Everyday.  It took me a good 6-7 months to get my sleep schedule back on track after that awful ICU sleep-wake cycle.  I had no appetite at all for months, but I knew I had to eat.  My family would talk to me about it, my friends would talk to me about it, my friends would even send my mom picture messages of my meals so she’d know that I actually ate.  It was ridiculous.  I lost 25 pounds!  I don’t even have 25 pounds to lose haha.  I am only five feet tall.  When one of my closest friends saw me, she was shocked at how small I got.  Well, yeah.  I was in a bed for 12 days (pretty much) straight and for the first at least week of my hospital stay, I was on a liquid diet until I could swallow again.  Even after coming home, I was so depressed and miserable at this “new life” that I didn’t even want to eat.  Nothing sounded good, then I couldn’t keep anything down.  I had horrible acid reflux every single day.  I was a total mess.

Slowly, and I do mean very slowly, I began to recover back to some sort of “me.”  That fiery, inquisitive, smiling, laughing, music loving, God praising, yellow is my favorite color young lady is still in there.  She was just buried beneath layers of “what is this?”  I don’t wish it on anyone at all, ever.  A lot of writing, a lot of church and good relationships with good friends at church, talking to God and giving this recovery up to Him, a lot of music, a lot of tears, my family, my friends, and eventually therapy (I have an awesome therapist) have all played serious parts in helping me as I go through this journey.  I don’t know where it ends, or if it ends, but I am stronger now than I was last year and I’m actually at a place where I can say I’m grateful for this, because of how much it has impacted my walk with God.

If you’re a survivor or a caretaker reading this, I can only suggest that you (survivor) tell the people in your life that you need their support, but you also need space to move.  Be honest that you won’t do anything you’re explicitly told not to do, and be honest to let your loved ones/doctors know when/if something is off.  Better safe than sorry, for real.  Caretakers, thank you for loving us, but please give us space to try and navigate these waters.  We know that you only want the best for us and that you are looking out for us from a place of concern and care, but we really need to be able to fight this battle for ourselves.  You can fight alongside us, but trying to shelter us from everything isn’t going to help us.  We will take good care of ourselves, and we appreciate your support. It really does mean the world to us.

At under 2,000 words, I’m keeping this entry “short” hahaha!  That’s really all I have tonight, just some thoughts on my mind. :)  Hope that y’all are all doing (and feeling) well, wherever you may be in this world!!

As always, keep the faith, keep the fight! :)

Terrified.

Seriously felt this way so often “in the beginning.” Some days I do still feel this way. I still miss my “old life.”

^That graphic came from TBI Hope and Inspiration which is pretty awesome, so check it out by clicking on the link!

If I had to describe the way that I felt as we were in the car and I knew I was going home, I would say grateful, but terrified.

The only thoughts coursing through my brain were: “Okay so now what?”  “Am I going to be normal now?”  “What if something happens to me and there aren’t any nurses around?” “Am I just going to die?”  “Is this tingling sensation normal?”  “Should I be crying in the middle of the aisle at the grocery store because it’s too loud and I’m too tired and I just want to go home?”

When I got home, I was bombarded with greetings from people.  People that I don’t even know knew me and would approach me asking me questions, I didn’t feel like talking.  I was ex-hau-sted.  It’s another level of tired.  I guess you could equate it to working a 180 hour week or something.  I don’t even think that does it justice.  The day that I came home, we had to stop and fill my prescription for my pain medicine (because that’s the only medicine I was discharged with… No anti epileptic drugs or anything else.  Just Norco!) and get some food.  People were seeing me, asking me questions, asking my family questions and all I could do was pretend to feel awesome when I just really wanted to get away from fluorescent lighting and go lay down.  My head hurt, the lights hurt, the sounds hurt and it was just too much at once.

It’s been 19 months today (I’m writing this on Friday night and scheduled it to post on Saturday evening) and I’m still that way.  Too much external stimulation makes my brain just kind of shut down, in a way.  It just has to focus on one thing at a time or I get really confused, irritable and lose focus.

I remember everything being “on steroids.”  My hearing was magnified times 10,000 it seems!!! I could hear a watch ticking across the room.  Seriously, like it was sitting right next to me.  It was so surreal and seemed like living in some alternate universe.  Sounds aren’t as magnified anymore, but I am still (and I always was, even pre-rupture) very sensitive to sound.  Colors were brighter, I hated (and sometimes still do) headlights on the cars.  With oncoming traffic, I wore my sunglasses, even at night.  No, that is not a fashion statement, it helped (and sometimes still does help) me focus better.  I keep the brightness on my phone (and sometimes computer) turned down as low as it can go, because the brightness hurts my eyes.  Maybe my eyes are still mad from all of those hourly wakeup calls and checks for pupillary reflexes hahah.

I was home, and it was great, but I was still terrified that something horrible would happen and I would just die.  As I mentioned in an earlier post, having this smart phone has been awesome for keeping in touch, but it has also been detrimental to my health.  I would read, and read, and read for hours about all things aneurysm/stroke/brain injury related.  If there’s something to know, I probably have already read about it.  Every ache and pain would send me into a slight panic attack because I would think it meant imminent death.  Surely you can’t be saved every single time, right?

Enter: health anxiety.  On a severe level.  I was scared to take a shower alone, I was scared to take a bath alone, I was scared to sleep with the door shut, I was scared to not have my mom around to take my vitals (you really get used to that when they’re constantly being monitored while you’re in the hospital for nearly half a month), I would write down everything.  The time I took the Tylenol, the time I took the Norco (hydrocodone/acetaminophen), the time my mom checked my o2 stats and blood pressure (and what they were), what time I ate, what I ate… Everything.  Because if something went wrong, I wanted to be able to know exactly what was in my body and what amounts at what times, and I wanted to be in a position to be able to “speak” for myself if necessary.  Obsessive fears with health.  It isn’t as bad anymore, but I do still have my days.  When I get a barometric pressure headache that’s just a little too intense, I get a little panic-y that it’s something more serious than “just” a headache.  After all, this all started with “just” a headache.

I was terrified (but would rarely show it) probably every single day for a good six to seven months, I’d say.  I couldn’t sleep at night because I’d be on the phone reading.  My dad would get so mad at me and say “Robin, put that phone down or I’m going to take it away from you” because he was tired of seeing me fighting sleep and reading horror stories.  I would cry because I just wanted knowledge and to be prepared because “nothing like this is ever happening to me again” was (and still is on certain levels) my mindset.  I would cry because nobody ever tells you that the “new normal” isn’t really normal at all and you’re not prepared at all for a world outside the four walls of the hospital(s) you were enclosed in.

The reason why they don’t tell you is because, they don’t know!!! Nobody knows, and that’s the craziest thing about it.  They know how to clip, coil, staple and stitch you back up, but they don’t know what to tell you about after you go home.  Nobody really gives out information on support groups, nobody tells you that you are going to go through a process of “recovery” that is more like grief after losing a loved one (your old self–and that really is what it is) instead of “okay, you’re good to go now, call us if you need anything!”  It’s not that simple, and you can believe that we all wish it was that simple!

It’s not that simple.  You learn as you go, and I have learned that this (recovery) process is not a linear process.  I expected recovery to be like a straight line.  You reach this milestone, then the next, then the next until one day you’re “all better.” Hahahaha.  Yeah, right!! That’s funny.  No, this recovery is like a bouncy ball that jumps from surface to surface, and nobody could tell you where it will land.  It’s unpredictable and you just kind of hang on for the ride.

This happens to look sort of how recovery feels. All over the place and just when you’re upright, you’re flipped upside down again. Better get a tight grip!!

People expect brain injury/stroke/brain trauma recovery to be like a recovery for a broken bone.  You set the bone and put it in a cast, the broken pieces fuse together and everything is just right, right?  Wrong.  Not even close to being right, kind of wrong.  F- on a scale of A+ to F kind of wrong!!!  It’s tough to grade so harshly, but that’s the only way I can think to word it to where people might begin to understand.  It is not like that.  First off, the injuries/deficits/disabilities we are left with are often invisible.  That poses a major problem in its own right, because if you “look normal” then you “are normal.”  No, kill that misconception right now.  You don’t know what someone is struggling with on the inside, so assume nothing about them.  When something traumatic happens to someone’s brain, I don’t care how “normal” they appear to be on the outside, there is something that doesn’t add up like it used to, on the inside.

I have had several neuropsychological tests done and they all show certain deficits/disabilities that I did not have prior to this incident.  I look normal except for a few scars, but my brain does not function like it did prior to this event.  I have had to try to process that and accept it.  The task of explaining it to other people (when the situation arises) is where things become tricky and irritating.  I don’t dwell on it or try to use it as a crutch, but it is a reality that I live with every single day, so you need to understand that and work with me, as well. There are things that I will never be able to do again like I could “before,” and I still get upset about it sometimes.

It’s just entirely frustrating sometimes, and some days are better than others.  I have mostly good days, a few great days, but I do still have bad days where I just kind of wish none of this ever happened to me.  The only thing that keeps me going is my faith in God and that He can use this for good (Romans 8:28) and I have seen evidence of Him using it for good, because I know I couldn’t have done it on my own.  I love knowing that I can (and am) impact(ing) others by being candid in my journey and I’m not ashamed to say that I have a brain injury.  I am not dumb, I am not incapable, I am not less than.  I am a survivor, not a victim, and I demand and expect to be treated as such.  I know firsthand that life is way too short to expend time and energy on anyone trying to bring me down, and I have zero doubts/regrets about cutting ties with those people.  See ya later.  I will forever fight for what I believe in, because that’s how I have gotten this far.  I believe in a good life, even if life doesn’t feel good… That’s why I fight for it everyday. :)  That’s just who I am, who I was before, and no brain injury or deficit will change that!

Fellow survivors, half (or maybe 40% because it seems like recovery is 60% haha) the battle was won the day you left that hospital.  You may be going through it now, at home or in therapy, or both… But you keep fighting!!  I know the road is long and winding.  I know it’s tiring.  I know you want to just give up.  I know you want to scream, throw things, break things, and curl into a ball and bawl your life away.  I know.  I’ve been there.  But you are here for a reason and you do still have a purpose.  Don’t give that up.  Don’t let this beat you, because you already beat it when you survived!!!  There are many before us who passed on, there have been many since we were affected, and sadly, there will be many more.  I seriously just want to encourage you all to keep the faith, and keep the fight.  That’s my life motto, and I carry it with me everyday.  It cannot stay dark forever, because the sun has to rise again.  Find your peace, and find it daily.  Get quiet.  Dance around.  Laugh.  Grab a favorite drink with a good friend.  Read a good book.  Watch a good movie (if you can tolerate it, sometimes going to the movie theater gives me a headache, I know! Haha), feed yourself well, sleep well.  Go for a walk.  If you believe in God, pray.  Seek Him and ask Him to better you through this process.  Let Him work.  If you do not believe in God, but you want to, you can still talk to Him.  Just let Him know that you want to know Him and would like to give your heart and life to Him.  He will be there for you.  Do something active.  Make a difference in someone else’s life, even if you feel like yours has been stolen from you.  I get it, trust me, I understand.  You can still live, it just has to be a different life now.  Do something creative.  Turn on some good music and just listen to the words and soak them in.  Do anything (as long as it isn’t illegal haha) to keep yourself going.   Just, whatever you do, do not give up.

It’s nearly midnight now (Friday night) and I have this post scheduled to publish at 7:15 on September 7!  I am about to go to sleep because I have to work tomorrow.

Goodnight, y’all, and I will keep the posts rolling. :)

Fight On!!

The entries stopped after February 9, except for February 12 and 13th, which you can read here (February 12) and here (February 13), so I will just tell y’all what I vaguely remember, and when I actually started forming “real” memories that are concrete to me.

I remember:

• Bits and pieces of my ICU stay from the first 9 days.  What I do remember is very fuzzy to me, though and doesn’t seem like reality.  It seems like a dream or someone else’s life.  I remember posting a status on Facebook on (I believe) February 10, and I got really upset because I’m a perfectionist and I couldn’t say what I wanted to say the way I wanted to say it.  I think I posted the same status twice haha.  I know I talked on the phone to my grandma (who is an incredible woman and support for me) because I posted a status about how she told me I’m “love personified,” and it made me cry.  I know I did these things,  but the memories don’t seem real at all.  I remember very hazily seeing one of my good friends, his mom, and friend at my bedside, but it doesn’t seem real.  I thought I was dreaming.  However, sometime during the ICU portion of my stay, I kept asking about “the book Matthew brought me” because I knew he brought me a book and I remember him talking to me.  It just seems like a dream.  He’s such a good guy and friend.  Matthew, if you’re reading this, I love you so much and thank you!!!

• The horrible sleep-wake cycle.  I know, I know, the doctors have to do this to check for your neurological status, I get it.  However, when you feel like you’ve been run over by a Mack truck (or ten), all you want to do is sleep.  Nobody (in the situation I was in/as a patient) cares about the year, president, time on the clock, if you can squeeze with each hand, move your legs, and whether or not your pupils respond to the light in that (way too bright) flashlight.  It was SO annoying to be woken up every hour on the hour, you never got adequate rest and that just contributed to how crappy you felt.  It took me a good 6 months after coming home before I was able to sleep like a “normal” person again.  It’s exhausting and now when I wake up in the middle of the night, it just brings all that frustration back to me because I’m so tired and it reminds me of ICU and I don’t want to think about that.  I know it has to be done, but trust me, it is not fun when you feel like a brain injured patient feels.

• Memories are a little more clear after the 10th and I know I posted more statuses and tried to catch up with everything on my Facebook.  It was flooded with support, statuses, messages, pictures, anything you could ever dream that people would say about you when something like that happens.  I had to scroll, scroll some more, and scroll some more just to see where it all began.  Sometimes I still go back in my timeline just to see it all again.  It’s like a dream to me (well, kind of like a nightmare if you choose to see it that way haha) and I am still overwhelmed at how much people reached out to me and to my family.  Thank you all, so much!!! It means more than I can even write or say to you.  Thank you.

• My speech therapist because she challenged me.  I remember acing the tests she had to give me, so she came back the next day with a harder test and was very impressed at how well I did, considering the extent of my injury and how soon after surgery I was assessed.  So, kids, pay attention in school!!!  You don’t know when you might need to use something. I think beginning to read at a very early age (3 haha) and taking advanced English classes/challenging myself in school paid off.  She also did my swallow studies and I remember having to put powder in my drinks to thicken them because I wasn’t able to swallow properly, yet.  I drank a lot of thick apple juice.  It was kind of like a watered down slushy. :)

• Getting sassy with this guy right here:

One of my favorite nurses, Abdul!!! He was so awesome, even if he pushed me to help myself, when all I wanted to do was sleep! That’s what I needed, not what I wanted haha. :) We took this December 2012 after my follow up with my neurosurgeon and we were right outside of “my” ICU room!

Well, well, well… Just how did my family know that I was slowly getting back to me and not this drug filled, fall over at any moment young lady because of a combination of brain trauma exhausting me and copious amounts of heavy drugs running through my veins?  Because, this guy pushed me to order food one morning (once my swallow studies were all good and I could eat solids again) and I told him I wasn’t hungry and just wanted to sleep.  He had already taken my NG (nasogastric) tube out and told me that if I didn’t order food he’d “have to put the NG tube back in.”  I snappily told him “No, you’re really not.”  He said “I will if you don’t eat, you have to eat.”  I said “Fine! Whatever! Just order me some pancakes or something!!!”  I was soooooo irritated with him hahahahah.  I laugh about it now, and we laughed about it the day we got to take this picture together, but that’s me.  If I don’t want to do something, don’t try to force me to do it because I will meet you with resistance.  I am stubborn and I was also tired, confused, and wondering what was really going on.  Memories were more clear at this point, but I was still under a lot of drugs (seriously, how many different meds can you put into someone in a 24 hour period?! It’s appalling!!  When I look at the list of daily medications I took in my 10 ICU days, I’m just shocked) and probably very irritable from a lack of understanding.

Anyway, he is an incredible nurse, and one I distinctly remember.  He told my survivor friend (who was his co-worker and the one who had the same rupture/surgery/neurosurgeon as me) there’s no way I remembered him.  I had to go back to ICU in December during my last follow up just to see him!!! It was so awesome. :)  I loved that day, and I wrote about it here if you want to read about it. :)  That fiery side of my spirit coming out was a sure sign to my family that I was going to be okay, that I was still me, even if I was buried under heavy drugs and trauma.

• Having severe neck and back pain and literally crying because of it.  I didn’t cry because of the 33 staples in my head or the incision, but I remember one day in particular where my neck and back hurt so badly, that I Just broke down crying.

The incision. I don’t know what to say about this, but I think that’s my dad standing behind me trying to keep my head up so my mom could snap a picture of it. You can see most of it, and the staples. There were more down the side of my head, though. Craziness!

It was probably a combination of feelings that hit and overwhelmed me at once, but I was just over it this day.  The right side of my brain was mostly affected, it’s the emotional side of the brain.  To say that I felt (and still do feel, always did feel even pre-rupture) emotions very deeply is an understatement.  I am a very sensitive, but not very emotionally expressive person.  For me to just break down into tears like that kind of freaked me out, not gonna lie.  Another awesome nurse, Gil (who I really wish I could find somehow to thank him for being so awesome!!) tried comforting me by rubbing my neck and my back while I just cried.  It was sad in a way. :(   He was awesome, though, and I do remember him (and Kim) too!!! I even remember a conversation with him about Twisted Root hahaha.  Don’t ask, my memories are weird.

• My transcranial doppler and the tech, Sarah, who did it for me.  It was either really late at night or really early in the morning, because it was pitch black outside.  My neck and head had been hurting so badly, that I told her “I love it when you do this because it feels like a massage.”  She was very kind and patient with me.

• Nimodipine  (Nimotop)!!!  Giant, horse pills that I had to take everyday to prevent vasospasms.  Vasospams can occur after SAH (subarachnoid hemorrhage–bleeding into the space around the brain and skull) and further complicate your life.  Vasospasm is a sudden constriction of a vessel which reduces blood flow.  Definitely not good!!!

• PICC line in my left arm.  I had to sleep with my arms behind my head rather often, like this, to keep from sleeping on my side.

Abdul told me “Robin, don’t sleep on your left side or else you could pull out that PICC line and you could bleed to death.”  Well, that’s reassuring!!! Hahah. Needless to say, I did NOT sleep on my left side.   All of those machines, wires, lines.  Get off of me!  It was so annoying sometimes.  Abdul is also the one who pushed me to go on walks around ICU once I was no longer a fall risk (yellow gown=fall risk) and I did not ever want to go.  I just don’t think anyone understands the level of exhaustion.  It is SO exhausting to have to do anything when your brain is traumatized like that.  It’s shocked and your body just follows suit.  Once he finally got me to get over my stubborn ways, I agreed to a walk.  However, I did not want to drag the pole around with me that had me hooked up to an IV.  Hahaha.  Always trying to do my own thing.  I ended up taking the pole with me.

 

• Falling asleep mid-sentence while talking with my older brother.  Hahahaha.  Literally just fell over to sleep, in my bed, right in the middle of my sentence.  Give me a break, a nurse had just given me Dilaudid (STRONG pain medicine–and I’m rather petite anyway) through my PICC line so it went straight to my system.  I remember talking to him and then nothing. The next day he woke me up and said “Sis you were just talking to me and you just stopped talking and went straight to sleep.  Whatever they give you, that stuff is strong.”  We were laughing so much about that.  It’s still funny to me!

 

• February 13, Michael (Matthew’s brother) came to see me and my family.  He brought AMAZING barbecue (hey, I’m a Texan and my food restrictions were lifted) to ICU for all of us, and this my first “real” memory.  I can’t tell you the specific dates that all of the above happened (except for what’s in my timeline on Facebook where I posted about it) but I can tell you about this day (and every day after) just like it was yesterday.  I don’t know what made my mind start registering memories after this, but I’m glad my “first real memory” is something pleasant.  Michael was on my left side, my older brother was in Texas from Ohio (and he had been, I just didn’t really remember or know it) and was on my right side.  My mom was in the room, and I just remember a basketball game being on TV.  I remember eating the best food ever and asking permission to drink a Dr Pepper.  Hey, that’s a true Texan for ya!!  It was the best food and such a good time.  It may have been cold outside (I know it snowed the day before), but I felt really warm inside my heart.  So grateful for you, Michael, and I will seriously never forget what you did for me.  Thank you, I love you!

 

• February 14, I was woken up right around 6 AM by “some kid” who is actually a resident doctor (he looks really youthful, seriously) and he removed my staples.  I asked him if it was going to hurt and he told me no.  I told him “okay, well you can do it, but if it hurts I’m not going to be happy with you.” Hahaha. Who do I think I am?  He took them out very quickly (didn’t hurt, just stung) and I asked him “Did you get them all?  Are you sure?”  because by this time (8 days post operation) my hair had already started growing back in and the stitches were the same color as my hair (and probably about the same length too) so I just wanted to make sure he didn’t miss any.  He reassured me that he got them all and I was content with that. :)  One of my best friends and someone I consider a sister to me came to see me.  She brought me a book I had been looking for (but couldn’t find) right before any of this ever transpired, and a stuffed dog that I still sleep with today. :)  Megan is an incredible friend and extremely loyal.  That girl was by my side nearly every single day except two, I think, of the 12 that I was admitted into the hospital.  Mind y’all that the distance between where Megan lives, the campus of TCU in Fort Worth, and the hospital in Dallas isn’t exactly a cakewalk.  DFW is jam packed with people and traffic, everyday!  I remember conversing with her, laughing about her stories, and being encouraged by her.  Megan, thank you so much for everything, and I love you dearly!!!

 

• February 15, I was finally moved upstairs and out of ICU.  I was still in the hospital, but had more independence and I was able to have all of the flowers that people had sent to me or brought to me.  Megan had them all at her house for me and brought them back up to the hospital for me. :)  Thank you, love!!  I had another “moment” where I became very emotional about not being able to take a shower.  I’m extremely independent, and all I wanted was to take a shower.  In ICU they had told me once I moved upstairs, I could take a shower since my staples/stitches were out. I would just have to be careful and could only wash my hair with baby shampoo.  Once I got upstairs, I was so ready for that shower (my muscles were tense, I was sore, I was tired, I was feeling disgusting and dirty because I hadn’t taken a shower/bath since the night my aneurysm ruptured–which was on February 4th!!!) that when the nurse told me she’d have to get approval from the doctor the next morning, I started bawling.  Don’t take my hope from me. :(  I know it wasn’t her fault at all, but I was just extremely upset.  Remember, I was still trying to understand what happened, what would happen, the emotional side of my brain was affected, and I was still on a ton of drugs.  I think breakdowns might be normal.  I’m just surprised I would cry like that over something so “simple” as a shower.  But experiences like this will teach you that the simple things are what matter most.  If a girl wants to take a shower, let her take a shower!! Haha.  I eventually got over myself, got in the bed, put the “massager things” on my legs, and just decided to do some more research and chat with friends.  This is the first night I stayed alone (without a family member with me) and I remember watching a movie.  Parts of it, anyway.  I fell asleep!!

They’re actually called sequential compression devices, or lymphodema pumps, and they help prevent DVT–deep vein thrombosis–when you’ve been in the bed for DAYS… Which I had been, at this point. I loved these things and somehow they made me feel better! Take what you can get :)

• February 16– I had the most glorious, wonderful, cleansing, perfect shower of my life.  Ever!!!  Finally!  My mom had to help me, and stay with me just to be sure everything was okay.  She helped me wash my hair and incision and I was just glad to finally take a shower.  Bed baths are alright, but they don’t compare to an actual bath or shower.  This was my first time being submerged in water since February 4, and it was glorious. :)  I remember being exhausted, yes… Overwhelmingly tired after a 15 minute shower, I got dressed and slept for the rest of the afternoon.  The energy that these brain traumas drain out of you is unreal, for real.  It’s inexplicable, but it’s like trying to run on a battery that is consistently low.  That’s the only way I can think to describe it, and I really hope you don’t ever have to experience it.I remember having an awesome nurse and respiratory tech, too.  The nurse reminded me of an old co-worker from the days when I worked in the E.R. as a patient representative.  The respiratory tech had a very unique name and I won’t forget him, either.  They took excellent care of me and they were amusing.  It was nice to have them there if I needed them (had to do breathing treatments, both because I’m an asthmatic and because I had been intubated and had a ventilator breathing for me in those earlier days!) but to also have my own independence.  Hahaha, this is the same night that the nurse set my bed alarm and I set it off!!!  It was in the middle of the night and I had to use the restroom.  I forgot that she told me she she the bed alarm and for me to call her if I needed anything.  I took my “massager things” off, and went to put one foot on the floor.  Next thing I know, there is all of this commotion going on because I set off my alarm!  I called the nurses station and explained to them what had happened, and someone came to turn it off and sit in my room to make sure I could get to the restroom and back safely.  They just have to watch you to make sure you’re stable enough.  I was okay, and I told her I would be okay by myself, but I understand the necessary precautions.  I think I watched a movie on this night.  I was also alone for the second night, and it was nice to just be by myself.  I am an introvert, after all. :)

 

• February 17- Finally!!!  After 12 long days in the hospital, away from home and any sense of normality (which I still haven’t recovered, by the way), I am going hooooome!!!!  I woke up alone and soon got in touch with my mom to let her know that I was going to have discharge orders brought up to me soon.  A doctor and a nurse came in to talk with me and see if I had any questions, and I felt secure because they were attentive and explained things to me in a way I could comprehend.  I ate breakfast, and got into some comfy clothes for the ride home.  My last nurse removed my PICC line and I had the funniest reaction to it!  I said “Oh my gosh!! I didn’t know it was a hole!!! Is this thing going to close up?!”  She reassured me that it would, and I could remove the bandage/shower the next day.  It did close up, I just have a small scar where it was.  Reminds me to keep pushing when I see it. :)  She explained my discharge instructions to me and was very clear on the Acetaminophen (Tylenol) products, only. No NSAIDs (Ibuprofen-Motrin, Naproxen-Aleve, Aspirin, etc.) Do not exceed 3,000 MG in a 24 hour period so you won’t damage your liver.  I still stick to that today.  I rarely ever take any NSAIDs even though it’s been OK’d now, and I’m still very strict about how much Tylenol I take.  Not trying to cause anymore damage to my body.

I feel like I should apologize to my liver and kidneys anyway, for all the hard work I put them through last year with so much medicine in those 12 days.  Haha.  I treat them well, though!  Minimum medication, I just tough it out or find a way to ease my mind with relaxation techniques.  Only medicate if I have to do so.  My hair had grown back in some, but it was still long in the back and my incision was still swollen.  They rolled the wheelchair up to get me, I insisted on walking, they won that battle, and I finally got to go outside and see daylight outside for the first time since I came home the evening of February 4, 2012.  The car ride home was surreal.  It felt like I was in another world, even though it was the real world.  I felt a little dizzy/disoriented and tired, but it was great to see the city again and not be in between 4 walls.

I turned around to look at Marcus who was taking pictures of me with my phone. This was February 17th, and Kristen was behind me preparing to remove my PICC line.  That’s the stuffed dog Megan bought for me/brought to me on Valentine’s Day when I was still in ICU!  Face was still swollen.

I was reviewing the paperwork, and signing to acknowledge that I had received and understood my discharge instructions. Almost time to go home!!  You can see how swollen my incision still was.

What a journey.  That’s my story, and it’s only the beginning of this journey.  It has been 19 months today since the day I was admitted to the hospital, and it still seems like a dream or that I was living someone else’s life instead of my own.  12 days in a hospital, a lot of love, a lot of faith, a lot of fight.  Incredible neurosurgeon(s), amazing nurses and skilled therapists/techs.

My amazing God used every single one of those people as instruments to assist in saving my life, but I still firmly believe that if it had been my time to go Home, nothing any of them could have done would have been enough to save me.  My God is an awesome God and I am forever grateful for all of the blessings He has provided to me. 

 

My journey has not been easy, but I have a bright outlook on life and I know for certain now that life is way too short to spend in perpetual misery.  I refuse to do so, but it’s a choice I have to make every. single. day.

That’s all for now, I’ll start getting into other issues “for us” in my next post!!  Just wanted to finish up my own journey, first.  All of the entries that were recorded in my journal are on the site and you can read them here: February 14, February 15, February 16, and February 17. :)  You’re welcome to read those if you’d like.  I’m an introvert (I know it doesn’t seem that way) but I am willing and able to speak about my own journey, and I believe it makes a difference.  I think it’s part of what I should do with this journey, and even though I might not talk much in person, I don’t mind writing about it.  It helps me and I am constantly receiving feedback of how it has helped others.  That gives me purpose to the pain.

Keep the faith, keep the fight!!
Goodnight, world!