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. :)

“How do you spell aneurysm?”

Was just one of the many questions I asked during my stay in ICU at UT Southwestern in Dallas, Texas.

Being the ever curious person that I am, once I got my phone back, I began to research incessantly on this aneurysm.  I wanted to know what it was, what it did to me, how it invaded my brain, I wanted all of the answers.  I was on my phone as often as I could be, and it was educational, but also detrimental to my recovery.  I’ll explain, but let me pick up where I left off, first…

February 2012 (continued):

Sunday, the 5th (very early AM)- Instead of spending my Superbowl Sunday amongst family and friends, having a good time, I was in a local emergency room, told that my brain was bleeding, and then being prepared to be flown via Air Evac (second time in my 25 years) helicopter to another hospital.  I don’t have a memory (at all) of any of this, but my mom, sister and friends that were present told me that I was conscious and communicating, cooperative.  They said that I was strong, but I was also told that I was in severe pain.  Feel free to go into my archives and read the events of this day as told to me through a journal my mom and sister kept for me, I’m just condensing it here.  I really can’t imagine what I must have been thinking or feeling, and that is something I’ve had to work through.  Not having a memory, but knowing something happened to you is such an odd experience.  I just don’t know anything, and it is so weird.  I know that I was almost misdiagnosed with the flu (it was in the Winter months and flu season) and I thank God for having an assertive mother who spoke up, telling the staff “Robin hasn’t been sick in years, and she never gets seriously sick.  Something more than ‘the flu’ is wrong with my daughter.”  That’s when they ordered the CT scan that found the brain bleed.  I’m pretty sure that everyone’s world stopped.  My sister actually works in the ER, and she was at work this night.  I can’t imagine what she must have felt seeing me sick like that.  The constant vomiting and then dry heaving was causing my blood pressure to raise which was, in turn, allowing more blood to leak into my subarachnoid space and furthering the bleed!  Eventually, they just had to sedate me and intubate me before flying me out.  I wish I had a memory of the flight.  Then again, I don’t want to know.  We landed at UT Southwestern (and my family/best friend drove to Dallas) early in the morning, and they admitted me to ICU.  They did a ventriculostomy on the right side of my skull to drain off some of the blood and CSF (cerebrospinal fluid) causing more pressure/damage.  One of my best friends, the one I wrote about here, tried to walk into the ICU room as they were placing the “brain drain” (what we called the ventric haha) and she was stopped and told it had to be a sterile field.  I can’t imagine what she thought watching them drill into my skull trying to save my life.  It’s surreal to me.  That’s unbelievable, actually.  Like some weird science fiction novel.  Ugh!  Anyway, some neurosurgeons got to talking to my family once they got the ventric placed and were allowed in the room,about what could have caused my brain bleed (did I hit it hard enough to cause this bleed when I passed out and had a seizure?  Did I have an AVM?  What’s going on?) and that same best friend is the one who told my admitting surgeon “Oh, Robin’s had a headache for 4 days.”  He told her “that changes everything” and scheduled an angiogram for the next morning.  For then, I just needed to be rested.  Nothing to raise my blood pressure, they kept the room ICE cold, and basically I couldn’t do anything but rest.

Lesson: Besides not liking professional football, now I really have a “thing” against the Superbowl.  Brings back painful memories in my mind. :( Haha. Boooo!!  But I am a Texan and I am thrilled for college football! :)  Gig ‘Em! ;) Haha.   If you know someone well and you know that their illness is more serious than what a doctor may think, do not ever hesitate to speak up. Besides being born at 24 weeks, I had never been “seriously” ill in my life.  This was a big deal and I’m very grateful for “my” people speaking up in my defense when I couldn’t do so for myself.  Demand further testing and answers when you just know that something isn’t right.  It could save someone’s life.  If you’re the one feeling ill, GO TO THE DOCTOR!  Haha for real, just go.  But it also doesn’t hurt to let someone know when you’re feeling really “off.”  You could help save your own life and not even know it.

Monday, the 6th-  Okay, I know everyone hates Mondays, but do not complain to me about “having a Monday.”  Having a Monday is having emergency brain surgery to save your life! Haha.  They performed the angiogram that morning and found the aneurysm.  They were able to formulate a plan, and decided the best option for my treatment was a craniotomy. Open brain surgery.  Ohhh.  Wow.  Once again, I can’t tell you what I thought or felt, because I don’t have any memories!  But I do know that I was being my typical self, ALWAYS asking questions, even though I couldn’t talk because of being intubated!  It’s a wonder to me that I was even conscious, much less functioning enough to “demand” answers from the anesthesiologist before I would go off to surgery!  How did I communicate?  Well, with sign language (we are both fluent in American Sign Language) with my sister, and writing notes in my journal!  I kept “saying” “these tubes hurt” (talking about the intubation) and “what’s going on?” “what surgery?”  I even wrote a note to the anesthesiologist asking him “how will this all work? I haven’t had surgery since I was premature.” Only I would do that.  Another funny thing is that when my pastor and family/a few friends gathered around me to pray, I motioned to the anesthesiologist to “come here” and kept waving my hand to get him to lean down to me.  When he did, I grabbed his name badge, read it, and shook my head yes in what I’m assuming was consent for him to proceed haha.  As if he needed my consent to wheel me to the OR.  My family was cracking up because that was so “me” to want to have some kind of control and understanding of the situation.  Even when your brain undergoes severe trauma, I guess you can still be “you.”  It’s a soul thing, I guess. :)

Easily, without a doubt, the most “telling” thing of this entire ordeal is the note that I wrote to my mom, though.  It still moves me to tears (and it will be 19 months this week) because of the power of it.  My mom had asked me if I was scared and I wrote to her “I’m not God is with me.”

I think it’s Rachel who’s holding this and took the picture, but this is the “conversation” between my mom and I on the morning of surgery.
In case it’s too difficult to read, I wrote (left page) “Are you scared?” and “Wow!” in response to something she probably said. I know she asked me if I was scared and I wrote “I’m not God is with me.”
Incredible. I will never get over this, and out of the many journals I have, this one is my favorite!!  Also, please excuse my handwriting. It’s not normally so messy, but my brain was bleeding haha.  Ro is my nickname, by the way!

All of the prayers going up for me (around the world, I later learned) were definitely felt and immensely encouraging.  To all of you, thank you so much.  It made a major impact.  Thank you.  Okay!  After this, it was time to go to the OR.  My family was told that my operation would take about 4 hours to complete. They all accepted that, and I’m guessing they were probably just ready to “get the show on the road.” However, there were some issues.  For “some reason” (and this reason is now a dear friend of mine–hey if you’re reading!!) my surgery kept getting pushed back! It was supposed to be early in the morning, then late morning, then it got moved to early afternoon.  Turns out that they had complications with another patient’s surgery who went before me.  We have the same neurosurgeon.  Our “brains exploded” on the same day.  Our ICU rooms were one room away from the other.  What in the world?  I don’t believe in coincidences.  This person and I connected last year and I am so glad for it!  We have a special friendship.  I always joke that I made our neurosurgeon’s day because my surgery was smooth sailing.  Haha.  We laugh about it now, but it definitely was not funny then.  Anyway, I’m in the O.R., the surgeon gets the access needed, and clips my aneurysm with (I believe) 2-3 clips.  Remember how it was supposed to take 4 hours?  Yeah, it took my surgeon 1 hour and 45 minutes!  You can read all about surgery day here, but I just can’t imagine what my family was thinking when they saw him come out of that OR and approach them with a simple (and you have to know him, because he is SO calm) “we’re all done.”
Apparently, my aneurysm was “superficial” (no, not like that, it was definitely real) meaning that it was on the surface of my brain and not buried deep within.  I consider this to be a blessing (as well as the location where it was) because the deeper it is, the more brain tissue they have to mess with to get to it, and it presents a higher risk of injury to the brain that’s already damaged.  Also, my aneurysm was on the right side, behind my ear, in my temporal lobe.  I learned later after reading some reports, it’s on my right Sylvian Fissure.  Don’t know what that means, but I know that’s where it is.  Had it been on the left side, same area, I could’ve lost my communication skills.  I could have not had the ability to understand words or communicate them properly.  Obviously, I like to write.  That would have been extra tragic to me, to lose that ability.  There is always a silver lining in the clouds.  At least, that’s how I choose to see it.

Lesson: Nobody seriously gets on Twitter before emergency brain surgery and makes sure to tell their followers “sick and going to surgery love yall.”  No one except you, that is!!!  Put the phone down, silly girl. Don’t be your sassy self and act like it’s your “right” to give the anesthesiologist your “permission” to do his job.  Hahahahaha.  Also, know that God is with you wherever you go and stand strong in Him.  You fight your way through, like you always do and you lean on faith in times of uncertainty.  That’s how your life has always been, and look how far you’ve come.   It’s a blessing and a miracle. :)

Tuesday & Wednesday the 7-8th- I don’t know the details of anything of the 7th, but I’m assuming I was probably just resting after surgery.  I bet that was probably difficult to do with 33 staples in a swollen incision in my newly (partially) shaved head!!!  You can read about these days here (for the 7th) and here (for the 8th).  The only thing I can think of as significant is that my tubes came out (I was extubated) on the 8th and I also think that’s the day they gave me back my phone! Haha.  Y’all know I needed that  phone sooo bad so I could continue my own research while in ICU, duh!!! :)  Typical Ro.

Lesson: You seriously don’t have to know everything about everything.  My appetite for knowledge is insatiable and it has served me well, but it has also caused me some harm in this journey.  It’s okay to want to know, but you also have to trust your doctors because they’re the ones who deal/have dealt with this everyday.  On the flip side, no one knows your body like you do, so if something is “off,” keep pressing for answers.  Be your own advocate for your health and don’t let any doctor try to sway you when you know something is actually wrong.  You’re not a hypochondriac (some people are, but if something just isn’t right and you know it, chase it) and just because they went to medical school and have some fancy letters after their name doesn’t mean they know everything, either.  Speak up!!

This is all I feel like writing for tonight.  This entry is already over 2,000 words long haha.  That, and I’m just kind of tired of typing!  I have still had a barometric pressure headache on and off today, I need to take my Keppra for tonight, and I want to continue reading a book I bought. :)  I’ll pick up in my next entry!  Hope y’all are all doing (and feeling) well, wherever you are!  I love seeing international hits on this blog!  Hey to all of my overseas readers.  Y’all should know that it makes me smile HUGE to see hits from the UK and Australia.  Spain. Ireland. Canada.  All of these other places!!!  I feel like I’m playing my small part in spreading the word, and if it can save another life, that’s awesome news to me.  It also reminds me to do what I can, with what I can, while I can, where I am.  I have been in this “waiting season” of life the past nearly 19 months, and it has been torturous to me in a way because I am so used to being all go, go, go!  I feel so… Idle and I hate it!  But y’all remind me that I am playing a part, and I guess playing a part doesn’t always have to be something major or something that requires full body movement.  Thanks!!

Keep the faith, keep the fight!!!

Goodnight!! :)