Saturday, April 25, 2015

I wanted to preface this with the warning that most of the beginning of this post is pretty negative, but it does turn positive at the end if you make it that far!  :)  I wanted to get this in writing so that I can go back and remember it years from now and also to possibly help anyone else that has to go through a traumatic brain injury......hopefully NOT!

To start this post, I wanted to mention the people who were able to visit me in the hospital who helped distract me from the pain and bring me delicious food as well!  Jon, Taesha, Sommer, Kayla, Mike from work, Eric and Melissa and Cooper.   I was feeling pretty good when they visited and I wasn't even faking it!   I didn't fake it quite as well and Chris and Katie brought over Gianni's Pizza the first night. When I hugged Katie, I just broke down in tears, but she just knew exactly what to say and it was a great visit.Once we got home, it was nice to be on my couch or in my bed, but to be honest, that hospital bed adjusted to 30 degrees perfectly (they wouldn't allow me to lie flat) and all the nurses giving me meds and taking my BP every hour that I thought were annoying, it was actually reassuring and now all that responsibility was on my poor husband.  He had to get my meds ready at the right times (I was to take Keppra, an anti-seizure med for one week....thank goodness I never had a seizure, this was just a precaution, plus 3 other meds).  He had to carry everything for me, he had to be with me every second when I moved to make sure I wasn't getting dizzy, he had to walk me up the stairs and made me a sign (in Spanish) to pause halfway up the stairs because basically any exertion would send my pain and pressure in my head through the roof.  Dustin was amazingly empathetic and was (and is) such a good caregiver.  I was scared, I was emotional, I was waking up all throughout the night, and he was always there for me. The first night home was a tough one, but he did his best to take care of me.

April 1st: Happy April Fools Day!  I wanted to wake up and this was just one HUGE joke that my brain was playing on me, but that wasn't so.  I was on the phone back and forth with all my health professional friends, Kendra, Stef, Kat and Scott, and Susan about medications and such and they helped me so much.  I made Dustin go to school and our friend Kyle came over to walk with me and got me lunch from Happy Girl Kitchen.  The pains in my head were changing and I didn't like it!As I was getting discharged from the hospital, the pain behind my left eye was increasing, today it was inside my left ear and I just wanted to stick a Qtip really far in there and clean that blood out (but Dustin didn't let me, he hid the Qtips!)  Jerry brought over dinner that night (meatloaf STUFFED with mashed potatoes and lined with bacon and Ben and Jerry's ice cream)......is everyone trying to fatten me up?  Hello people, I am not allowed to exercise or get my heart rate up!  The bad thing about this day was that I started getting a cough deep down in my chest and coughing increases the pressure and pain in my head, so I didn't sleep great that night either. Lavendar and peppermint essential oils were helping a little bit, but not enough.

April 2nd: Taesha brought me a smoothie and we walked outside and although I was moving slowly, I was feeling pretty good.  Bligh brought me lunch from Michael's and we walked in the afternoon.  Otherwise my days were pretty much spent on the couch talking to family and friends on the phone with no TV, computer, texting/Facebook.  In the evening, I went on a short walk with Dustin at an elderly patient pace and then sat in the sunshine which felt good. Jack brought yummy Crystal Fish sushi that night and also a great distraction.  My cough got worse through the night and I hardly slept because every time I would close my left eye, it would be a pounding pain and pressure behind it.

April 3rd: I saw my primary MD, Dr. Hendrick this afternoon and he checked out my ear and eye and said everything looked good from the outside and set up the referrals to see the neurosurgeon and wrote me notes for my jobs saying I couldn't work (this was tough to accept, but I knew it had to be done, there was no way I could drive or be responsible for catching patients if they fell, or especially not the computerized notes that go along with it).  I had been pretty emotional since this happened (something that is common with most traumatic brain injuries), but on this day, the anxiety started setting in as well.  When was I going to feel better? When was I going to be able to do anything productive?  I helped Katie stuff easter eggs for Chris's run (that I was supposed to be running in the next day) and that at least made me feel like I contributed, but beyond that, I felt like I was wasting away days in this beautiful place where we only have 2 months left.  Thank goodness we have done most every activity and hike and been to almost every restaurant and attraction in the area already in the last 3 years, so it made me feel like I could give my body and brain a rest for a few days when I looked at it that way.  The negative thoughts kept creeping in though, and I was having horrible dreams and whenever my heart rate would get up (I would be dreaming I was running, or biking down a hill really fast, or jumping into a swimming pool and all of this in my dreams was increasing my pain, and therefore my heart rate truly would go up and I would wake up with the pressure of my pulse pushing out against my skull and I would just cry!  I had to change positions very slowly still, so I would sit on the side of the bed, wipe my face and head with a washcloth, Dustin would get me a hot pack for my neck which was very sore still, or he would heat up a blanket in the dryer and wrap it around me like they did in the hospital and all of these comforting things would help distract me.  I would try to go back to sleep but I was afraid of more nightmares.

April 4th: Dustin went to run the 5K, then brought me Ike's for lunch, then I forced him to go play golf because I didn't want him to have "caregiver burnout."  Bligh came over for a walk and then Patrick and Kyle came over to watch basketball that evening and brought Petra for dinner.  (Of course, I would only watch like one or two plays and then look the other way to avoid overstimulation).  Again though, a good distraction.  I was tired when we went to bed, I knew I had to get some sleep tonight, but again it didn't happen.

April 5th: Easter Sunday. Since I was up throughout the whole night and would probably be up at 6 AM, I planned to go to Sunrise Service at Lovers Point with Dustin.  We had to sit far away by the water because it was really loud (any loud noises were painful as well), but it was beautiful as the songs played as the sun rose, and again I shed some tears but it was great to be outside. Taesha and Marty and Broden had us over for Easter dinner and it was so good to get out of the house and go somewhere.  That night wasn't any better with the sleep and this was getting really old!  I have never had a problem sleeping, EVER, so I called the expert on getting no sleep, Sue in the middle of the night crying!!!  She was so good at making me feel better about this and bringing my anxiety down to an acceptable level.  My stress was that I didn't want to keep waking Dustin up, he needed his sleep so he could continue to do well in his Spanish school with only a month left!  So, I moved to the couch and Dustin hooked up the Cardinal game to play through the computer on the TV and then put it on the golf channel for when the game was over.  2 sports that usually I cannot keep my eyes open for (except when the Cards are in the postseason).......

April 6th: When Dustin woke up the next morning, I was bright eyed after watching the entire game and moving on to golf.....I hadn't slept a wink, but at least he did!  He didn't want to go to school, he thought about taking me to the ER, but I made him go to class. Taesha came over to babysit me as I showered and I called numerous doctors offices trying to get appts and making sure that the Tricare referrals went through.  I finally got a call back from one of the trauma surgeons at the hospital and I told him about my eye pain, I wondered if going to the eye doctor would help so they could examine it further so he said, yes, do that, so I made an appt that afternoon and Dustin came home to take me.I had decided that the Fioricet (pain med that had caffeine in it) was the thing that was keeping me awake, so my PCP ordered Ultram for pain.  I didn't want to take it before the eye appt so I could really feel what was going on, but that was probably not a good idea.  I made it through the appt with Dr. Pemrose.  He dialated my eye and checked it out and said everything looked fine as far as he could tell.  We were done with the appointment and I stood up to walk out and got dizzy (for the first time since this happened) and felt like I was going to faint.  Dustin quickly grabbed me and sat me in the chair and I passed out for about 15 seconds. I could hear him calling my name and as I awoke, all I could think was "I finally slept!" but it was short lived. The doctor came in and told him I felt like I was going to pass out again and I did about a minute later for 20 seconds.  After I awoke, there were paramedics all around me and I thought to myself, "this poor eye doctor and the staff."  They gave me options of going home, having Dustin drive me to the hospital or taking my 2nd ambulance ride of my life, so I opted for the latter.  Not fun.

When we got back to Natividad ER, we had to wait awhile to get another CT scan, but it showed that the blood was actually dissipating pretty well, so that was good news, but I still frankly felt like shit.  Instead of being tough like I was last time, I was over this, I just wanted them to give me something that would knock me out for days, that would take away the pain! You know the song, "Wake me up when it's all over, when I'm wiser and I'm older!"  That's how I felt, so they pumped me full of Dilotid and shortly after that, Dustin wheeled me in the wheelchair to the bathroom and I started puking!  These pain meds just don't agree with me, but they gave me more anyway, along with Zofran (an anti-nausea med).  Kat and Scott got back from their vacation and met us at the ER (how fun for them! Welcome Home!)  The trauma surgeon Dr. McCague decided that I could go home, so that was good, but my pain was not controlled, I just felt nauseous, but still had pain/pressure in my head!  Kat and Scott spent so much time figuring out my meds and what worked for me over the next few days.  I would have definitely ended up back in the hospital if it wasn't for them!  These next few days were pretty brutal, and Kat and Scott went back and forth between their jobs as nurse practitioner and nurse and then would come back to our house to nurse some more. They did this for a full week even though I'm pretty sure their jobs were actually a vacation from our house! They brought me black out curtains because of the light sensitivity. Kat would actually read to me at night (The Art of Happiness) and comfort me by rubbing my forehead to try to get me to sleep. I kind of resorted to my childhood at times; I really wanted to watch the original 1961 Parent Trap for some reason and I wanted brown rice and butter because that's what Mom would make for me as a kid when I didn't feel well.  So, we all four cuddled on the couch watching this movie together (yes it took 3 nights to finish it) but I think it will be a good memory we will all remember for a long time! Dustin, Kat and Scott were waiting on me hand and foot, not letting me do a thing, which is not quite my style.  I was still waking up in the middle of the night with pain behind my eye, with anxiety, negativity, tears, and they still wanted to help.  We joked that they thought they'd been there to see the worst of Angie at the end of our endurance events like Ironman, the 50k run, the 50 mile run, the 62 mile run, but those were nothing!!  I kept asking them when was I going to get better? When was I going to feel like myself?  When was I going to be able to do anything productive?  They all three stayed positive through it all and just knew exactly what to do and say to comfort me.  If you ever have to go through something like this, these are the people you want by your side.  I am never going to be able to repay them for the unconditional love and support they gave me, but I will be eternally thankful.

April 7th: We thought that switching to Percocet might help me sleep because the Fioricet had caffeine in it, so I was trying that, but still puking my guts out, so that wasn't helping the head pressure!  Scott put me on the blandest diet and went and bought out all of the blandest of bland at Trader Joe's, including ginger snaps and ginger soda which really helped! He also accompanied us to the neurosurgeon's appointment at Dr. Choi's office.  After begging and pleading with Tricare and the doctor's office, he was able to stay open later and saw me at 4 pm and spent a full hour with us, answering our questions that Scott had written down.  He explained that I might need to be back on the Fioricet because it did have caffeine in it, which constricts the blood vessels which helps to reduce the pressure in my head.  He also said to drink some tea or soda with caffeine.  Are you serious?  I have spent my life trying to stay away from caffeine, I don't drink coffee or tea, I hardly drink soda or eat chocolate and now this guy is telling me the opposite?  Wow....ok!  The most important part of this appointment was when he told me a story of a guy with a very similar CT scan as mine and he told me how miserable he was at the beginning and then a month later he was almost back to normal.  He doesn't realize how much this story helped; he gave me one thing that I hadn't had this whole time.....HOPE.  I can't wait until my May 5th appointment with him to tell him how much that meant to me.  He also said, I had to get sleep, I was allowed to take Benadryl, Melatonin, whatever, but I had to sleep in order to heal, as well as stay hydrated and not do too much other than walk.  This newfound hope gave me something to look forward to, but it didn't help that I still felt horrible; in fact as I was leaving his office, I had blurry vision and it hurt to look down, he looked at me again and said that it would get better and so we left.  When we got home, I puked my guts out again as we pulled in the garage (by this time, we had learned I just carry a plastic trash bag with me at all times).  So, I wasn't feeling better, but at least I had HOPE.

So, it turns out that Fioricet was the miracle drug for me.  I was taking it every 4 hours now and it was helping immensely.  Toward the end of 4 hours, my pain would be about a 7-8/10.  It wasn't until April 11th that my pain was staying at a 2/10, which was helping my activity level immensely. I absolutely hated taking all of these meds, but at that time, my body needed them, so what the heck!  We were walking down the hill to the water and back up, which I hadn't been able to do. Yes, it was at an elderly pace, but I was doing it!

Ashley was making some yummy meals and bringing them over, Jon made us some home made pizza, Thierry came down from San Fransisco to take care of me one day since Kat and Scott had to work and Dustin had to go run 20 miles in preparation for the Big Sur Marathon (which I could not run anymore obviously).  Mara came down from Berkeley to help me with meditation, yoga, and massage! These friends and so many more (truly sorry if I forgot to mention anyone) were stepping it up big time when I was in need.  Our families and friends from afar were amazing with their texts, calls, facebook messages, flowers, and just love and support. I couldn't believe how everyone was so understanding of my emotional and physical condition!   During one of my emotional breakdowns, my parents called and they had already offered to come out to help and I told them I didn't need them, but I DID!  My Dad had another half marathon on Sunday that there was no way I was going to allow him to miss, so they came out on April 14th, right when Kat and Scott were leaving to get back to their lives.  Perfect timing because Kat and Scott definitely got the hard shifts and helped me to start getting sleep, being able to make it all the way up 14 stairs without too much pain or pressure in my head, figured out the meds, got me to the point where I could function like a normal human being!  They slowed me down at first which allowed me to slowly progress.  I could tell when I would do too much, either with my brain or with my body, and I would just get really really tired and have to nap.

 Everyone was doing a great job of keeping me positive as well.  A very important part of my recovery process was when Tony told me I had to watch a Tedtalk which is worth it to watch even if you aren't going through this process....
https://www.ted.com/talks/jane_mcgonigal_the_game_that_can_give_you_10_extra_years_of_life?language=en
We were already doing many of these things, but the main thing with the Superbetter game is to try to do something each day to increase your emotional, physical, mental, and social resilience and it was working.   I tried to tally up the small progressions to keep me positive......like being able to put on my shoes without sitting down, being able to pick things up off the floor, being able to fix my own breakfast, going longer between pain meds, being able to put a towel on my head after the shower, being able to lie flat when sleeping, and eventually being able to cuddle my husband like I used to (this was a big one!)

April 15th was a big day.  It was the first day that I woke up and smiled.  I used to do this everyday and I would take a moment to be thankful for my life, but because I had been feeling so awful, I hadn't been able to even fake a smile in the morning.  I smiled this day because I finally got a restful night of sleep and I was thankful I was alive and I promised myself that I would turn this unfortunate accident into being a better person.  I would slow down, relax, take it all in.  I would appreciate every person, every flower, every meal, every emotion, everyTHING on this planet.

My parents were here at the perfect time. They continued the positivity with uplifting song sessions, nightly uplifting movies and dessert breaks, and continued to drive me everywhere, cook, clean and do laundry the entire 9 days they were here.  One of the most important things that we did together were our morning walks and we progressed slowly from 1 mile to 2.25 miles and we would do these walks in beautiful places around the area like the coasts of Pacific Grove, Monterey, Point Lobos, and Carmel by the Sea.  How lucky was I to be able to heal in a place as beautiful as this!! Wow!  How many times do you get to have your parents care for you when you are in your upper thirties?  It was a strange thing, and I felt awful at times.  I love to help people......being helped, not so much.  But I needed it and they were there for me and I obviously would return the favor if they are ever in need.  This trip enhanced our relationship for sure, it made us appreciate each other, support each other, and love each other even more and I wouldn't change that for the world.

So, today is 4 weeks from the accident.  That means I haven't driven, worked, drank alcohol, or exercised to the point of getting my heart rate up for 4 solid weeks per doctors orders.  Those 4 things were a big part of my life before March 28th, but now they just don't seem so important.  I definitely miss helping and caring for patients, I miss the independence of driving, the feeling after a good sweaty workout, and even sharing a glass or two of wine with Dustin and friends, but what is more important to me now is simply LOVE.  I want to show more love, accept more love, love more sounds, smells, tastes, touches, feelings.  I want to try to give back the love that has been given to me over the last 4 weeks.....tenfold, and I think that will help me to continue to progress.

Saturday, April 18, 2015

On March 28th, 2015, my life was literally flipped upside down.  I wanted to start a blog from the very start, but it has taken me 19 days in order to get enough energy and courage to start writing.  It was around 7:00 PM and we were riding our "lazy" bikes back home from Peter B's after watching Wisconsin's win.  There were 6 of us riding slowly (about 5 mph or so) along the bike path near the Aquarium in Monterey, CA.  Dustin and Airik were up ahead.  I was on the right side of the path in front of the other three.  As one of our friends almost caught another's wheel, he tried to swerve and ended up T-boning me near my front wheel and sent my bike forward and my body backwards.  As I was flying up in the air, I thought about how I wanted to protect my head, so I pulled up really hard with my neck and ab muscles, but it didn't help.  I hit the pavement hard on the upper back right portion of my head and then my right low back, then fell to the left and the bike fell on my left ankle.  There was no blood, no abrasions, no injury you could see to the naked eye.  I never lost consciousness, but I was confused as to what the heck just happened.  I knew I hit my head and I knew I hit it really hard.  I knew I wanted to stay conscious, I knew I was going to be ok, and I thought maybe I could walk home and thought Dustin could drive me to the hospital just in case to get things checked out.  But then within minutes, my front left part of my head started hurting pretty badly.  So, my friend Melissa called 911 and the ambulance arrived shortly after.  As they were putting me on the stretcher and putting the neck brace on me, I threw up for the first time, not very fun to do when the pressure in your head is already extremely high.  Dustin was able to ride in the front of the ambulance with me, as a very kind EMT assisted me and kept me calm.  It was a surprise to us that we weren't going to the hospital right up the street, but to Natividad in Salinas about 30 minutes away because they have a much better trauma department.  It was a long, bumpy ride as I denied pain medicine because I wanted to feel what was going on in order to tell the doctors once I got there.  I also knew it would make me nauseous.

As they wheeled me into the ER on the stretcher and put me behind a curtain, of course we had numerous people coming in to ask questions.  One of the questions was always "you weren't wearing a helmet?" and I  would embarrassingly say "no, it was stupid, I know" and I pleaded with each person I met to please wear their helmets and have their kids wear helmets even if just riding around the block.  I hope I can help to prevent this happening to someone else in the future.

Protocol for accidents like these are apparently to cut off the patient's clothes as to not cause further injury, so they cut off my two shirts (one of which I had just purchased at the Treadmill and LOVED and my new Victoria Secret bra too.....oh well, material things truly don't matter as much as health, so I am ok with it).  They took a chest Xray, a pelvic Xray, and an Xray of my left ankle since it was pretty sensitive when they were moving me around.  Then, they wheeled me in for the important one, the CT scan of my brain.......it was actually outside in a semi-trailer and another bumpy annoying ride!  After it was over, when wheeling me over the bumps, I threw up again and further increased the pain and pressure in my head.  At around 10:30 PM (thanks to my secretary Dustin who entered in everything into Evernote on our phones), the trauma surgeon Dr. McCague came in to share the results of the CT scan of my brain.  It showed a significant bleed on the front left side of my head, a subdural hematoma between the brain and the skull, so they admitted me into ICU where I had a fantastic nurse who made me feel slightly more comfortable.  She got me a warm blanket and when she wrapped it around me, it was the first positive thing that I felt and I just started crying!!!  Such a simple act of kindness that meant the world to me.

Of course Dustin was by my side the whole time holding my hand and trying to make me feel better. Airik and Melissa drove out to the hospital but they wouldn't let them in the ICU until they had everything set up and they knew that I was stable.  My blood pressure and heart rate were low, but they always are.  They hooked me up to telemetry to make sure my heart was functioning well and there were never problems with that thank goodness.  They gave me platelets to slow the bleeding (and also because I had taken ibuprofen the day before because of monthly cramps).  At about 11:40 PM, Dr. Tran, the neurosurgeon came in and we had anxiously been awaiting his arrival.  He basically said that I suffered a moderate traumatic brain injury and that I would need to be in ICU for a couple days and then in a regular room for a couple days most likely.  He actually said "you have head full of brain, it fills all the nooks and crannies, so you will be feeling a lot of pressure and pain" and convinced me that I needed to take pain medicine so I could sleep in order to heal. It made sense and Airik and Melissa were allowed in the room right before they were going to pump 4 mg of morphine through my IV.  Thank goodness because as they did, I completely hated the feeling, it was like everything was numb, goosebumpy, nauseating and it felt like liquid was running through my knees into my toes.  I asked Melissa to squeeze my toe and she just kept squeezing and squeezing throughout the next 10 minutes or so and I didn't even realize she was still doing it!  That knocked me out and that was the end of that horrific day.

They did 2 more rounds of morphine and after nausea, vomiting, and itching, they switched me to Norco but then I started itching in my eyes and mouth, so they switched me to Fioricet, which ended up being the miracle drug for me that actually worked and helped with the pain and pressure in my head.

On March 29th, at 4 AM, they did a 2nd CT scan to make sure the bleeding had stopped and it had, so that was super good news because otherwise, the neurosurgeon explained that I would possibly have to have a craniotomy surgery where they would make a large cut in my skull.  At 3:15 pm that day, a physical therapist came in to do some neuro tests (which I had already been testing myself) and balance tests and I got to WALK outside the room, whoohoooo, with a gait belt!!!  I wanted to do stairs to prepare for going home, but they told me "you are still in ICU, you are not going home right away."  As I did laps around the ICU, I was definitely the luckiest patient in there.  You can't help but look in the rooms and see patients really bad off, on all kinds of machines, etc and it made me feel so lucky to be up and walking (even if it was the speed of my elderly patients that I usually work with).

After I got moved to a regular room on the 30th, I was starting to feel better and was on Facebook on my phone when one of the doctors walked in. That's when he told me my brain didn't need overstimulation at this time and to not be on my phone, watching TV,on the computer, or reading....what the heck was I supposed to do??  He also told me I couldn't drive for 6 weeks, so I really wasn't liking this Dr. Roth fellow.  He said it was because multitasking would be hard, but I told him I promised that I was still better than my husband at multitasking even with a brain injury!  Turns out though, most of the things that Dr. Roth said (with not very good bedside manner) were true (except the multitasking), but it would be very difficult for me to drive even now with my vision issues and pressure in my head at times, as well as the overstimulation from everything that happens when you are driving.  He also wanted me to limit any exercise, lifting, or straining at all because of increasing intracranial pressure.  How long until I can run? How long until I can go to spin class? How long until I can go in a sauna or go to Refuge to purge all these horrible medicines out of my system?  We were getting all kinds of different answers from different doctors, but basically it boiled down to when I feel better and don't have symptoms.  Turns out that is at least 20 days and counting and I am craving the ability to sweat!!!

After another physical therapist, speech therapist, and occupational therapist cleared my safety (thank goodness I never had motor, cognitive,


or speech deficits!) I finally got to go home late on Tuesday, the 31st and what a feeling it was to just feel the outside breeze and smell the fresh air.  I am not a person who likes to be cooped up and I was literally starting to go crazy!

In the next few entries, I will elaborate on the setbacks I encountered once I got home, including a fun ER visit, but I want to end this on a positive note.  I've always said everything happens for a reason, and I truly believe this happened to finally slow me down and make me appreciate relaxing more and giving me more quality time with family, friends, and especially my husband.  They have shown me such amazing love and support through all of this and have helped me each day to have new small things to celebrate.  We've never had a hard time celebrating, but this has taught us to celebrate even the smallest accomplishments.  And I am also so lucky to be in the most beautiful place on earth as I endure this slow recovery process.